(Israel Palacio on Unsplash) He’s quirky.”  Anyone who’s known Tom through the years will agree that I wasn’t wrong when I described him this way to a group not long after we had come to the final church he served as minister of music. He’s a musician; I’m a writer—we pretty much understood that quirkiness was part of the package when we married each other.  But now, I wonder just where his quirkiness stopped and the dementia behaviors began. And I don’t suppose I’ll ever know.   I missed many of the early signs that Tom was living with dementia—partly because his neurologist and others kept telling me he was fine. But because I didn’t know about the behavioral issues dementia can cause, I am writing about them now so perhaps someone else won’t have to wait as long for a diagnosis as we did.   Not everyone LWD exhibits these same behaviors, and not everyone LWD has as many behavioral issues as those with a variant that affects the frontal lobe. But in addition to those I noted last week, here are some more of the atypical behaviors we saw in Tom even before he received his dementia diagnosis:  — IMPULSIVE/RECKLESS ACTIONS: I have written about how he was blackmailed via social media and later gave away thousands of dollars to online scammers. Since he was always frugal, this was out of character financially as well as morally. I am still appalled at the way scammers prey on the vulnerable, but I wish I had recognized just how vulnerable he was much sooner.  — LACK OF MOTIVATION: I also wrote not long ago about how Tom stopped paying attention to lawn care. This same lack of motivation, in large measure, resulted in him no longer playing his trumpet (formerly a top priority for him). After he hurt his lip in a challenging concert in 2016, he received a detailed plan to help him heal and rebuild his muscle strength, but he never followed through. He still tells people he’s a professional musician; the sad truth is that he hasn’t practiced consistently since he hurt his lip nearly seven years ago, more than three years before his diagnosis.  — ODD PERSONAL HABITS: One day, I found him laying a towel down over the bathmat as he prepared to take a shower. When I asked about it, he said he “had never liked to get the bathmat wet.” It took a while for me to realize this was a dementia behavior, not a longtime preference that I had somehow missed. I remember watching the final funeral he officiated nearly five years ago and noticing how he constantly licked his lips as...

(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...

Photo by Andres Siimon on Unsplash I’ve had it!” my friend said. “I’m so tired of doing everything around here! She used to care so much about having a nice home. Now all she does is sit in front of the TV.”  His words about his wife, who is living with dementia, reminded me of a time in our lives in 2015—more than four years before Tom was diagnosed. He seemed more tired every night than he had in the past, and I wondered if he was aging prematurely or perhaps just differently than I.   And I really wondered about his obsession with simple computer games. In the evenings or on weekends, he would sit in front of his laptop for hours, not watching TV or engaging with me, just playing the same game over and over.    In the meantime, I was either doing housework or working on a freelance assignment or walking the dog or. . . you get the picture. But what I didn’t do was lawn care.  Our house in Florida didn’t have much of a yard; a pool and lanai (screened porch) took up most of the backyard. Mowing the grass didn’t take much time, but throughout our marriage, Tom had never wanted me to take on that chore anyway. And since I’m allergic to almost every kind of grass, I never minded.  Over the past year or so, he had done less and less with our yard. But suddenly, he wasn’t taking care of the lawn at all. We had no children left at home, so we couldn’t assign this chore to one of them. The grass that had almost taken over some of the beds around the lanai was growing again, and I just couldn’t take on this job too.  So—long before I took charge of our finances and every other aspect of our lives—I contacted a friend who has a lawn business. He and his team quickly got our yard back into shape, all while Tom and I were out of town, then continued servicing the lawn every week.  What should have seemed strange was that Tom never objected to nor seemed grateful for this plan. In the past, paying someone for something he could do would not have been his idea of a wise expenditure. But he never said a word. In fact, only a few months after I hired the lawn service, Tom sold our lawnmower for a ridiculously low price to a neighbor who needed one.  I was amazed. Was he planning never to mow the lawn again?  Now that I know that he was at least on his way toward LWD, I know he didn’t have a plan...

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...

(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...