Tom directs an outdoor Christmas choir performance, c. 2014 How it’s going:  — Tom asks for help much more often with the word games he plays on his iPad; sometimes he can’t fill in any of the missing letters or words on his own.  — At bedtime, he sits on the side of the bed, staring into space, until I tell him it’s OK to lie down and go to sleep.  — He occasionally tries to tell me about something that bothers or upsets him, but his sentences make no sense.  The prediction his neurologist made last year was accurate: Tom’s decline has been more rapid this year than in the past. He’s had two major falls in the last three months, although neither caused severe injury. In short, life has become more challenging for him and for those of us who love him.   But none of this either surprises or challenges God. My late friend and writing partner, Walker Moore, used to remind those in difficult situations, “The heavenly Father is not calling an emergency meeting over your life.” I know this still applies to my husband.  Last Thursday, as we do twice a month, we traveled with the Joy Singers (senior adult choir) from our church to a local nursing home. We spoke with the residents for a few minutes before presenting our usual mini-concert of popular hymns and old-time Sunday school favorites.   And then it happened. Our minister of music began the solo that ends most of our sessions, “I Bowed on My Knees and Cried Holy.” I stood with my fellow choir members, eyes closed for part of the time, as we listened and worshipped.  But Tom was looking straight ahead. And as he did, he noticed tears rolling down the face of one of our fellow choir members—not an uncommon response to this song, which describes a Christ-follower’s first moments in heaven.   Before long, he whispered to me, “I want to go over and sit with that lady” (whose name he doesn’t remember). Of course, I told him that was fine.  He walked over to join her on the little couch where she and one of the residents sat. Before long, he wrapped his arms around her shoulders as tears poured down his face, his concern obvious to all. I don’t think he said anything, but he didn’t need to. The sense of awe this song brings us grew exponentially; we all sensed we were watching God at work.  As the song finished, he gave our friend a final comforting hug and returned to my side. We and our fellow choir members spoke with a few more residents before leaving for lunch at a local...

Geralt on Pixabay Don’t have unrealistic expectations of your spouse. I had that advice drilled into me even before my marriage. I learned not to expect Tom, who had been raised in a far different family setting from mine, to do, say, or think things exactly as I did. I learned not to expect Tom, who was a pastor and spiritual leader, to be the perfect husband and father any more than I could be the perfect wife. And I learned that neither of us should expect the other to change. Instead, Tom and I learned, albeit slowly and sometimes painfully, to talk and pray through our differences. Sometimes he changed. Sometimes I changed. More often than not, we both did.  Having an increasingly loose hold on expectations has helped me survive without too many scars before and since our living-with-dementia journey. I say “increasingly loose” because as Tom’s dementia changes him, I must change my expectations too.   I wrote about how he stopped taking care of our lawn a few years before we knew he was LWD. Once I realized he was not going to take care of it (although I had no idea dementia was a factor), I stopped expecting him to do so.   But when we packed up our Florida home, downsized, and moved to South Carolina in November nearly four years ago, it bothered me somewhat that Tom didn’t help at all. He didn’t sort a single item or pack a single box. In fact, his attempt to box up the theology books he sold to an online bookstore became an organizational disaster that brought me hours of extra work. That incident helped lower my expectations. I understood: Tom could no longer pack. And I didn’t want him to. At that time, since we didn’t have any sort of dementia diagnosis for Tom, I was still operating in a not-so-magical neverland, not knowing what he could and couldn’t do or what I should and shouldn’t expect. After he lost three jobs in a row, I decided he could no longer work. I no longer expected him to do so. After he had some near-misses with the car, our family decided he could no longer drive. We no longer expected him to do so. And after both of these changes and more, I decided to move closer to family—whether or not Tom’s doctors ever agreed he had a problem. I no longer expected him to have the wisdom to make such a big decision in a wise, caring way.  All of these decisions shaped our expectations of Tom. But none of us had a real idea how much the expectations would continue to shift as we went along. Here...

Happy anniversary, baby!” I told Tom as we woke up on board the first day of our Great Alaskan Adventure Cruise.    He didn’t respond.   “I’m saying that because we’re on this trip to celebrate our fortieth anniversary. And I’m going to tell you that every day of this trip!”  He smiled. But beyond that, I never received a response any of the mornings when I wished him a happy anniversary.   One day, however, he surprised me. He proudly told our friend Hardy at lunch, “Today is a special day. It’s our anniversary!”  Not quite. But I knew he had listened to my greeting after all.   And this time, I was the one who smiled.  Just as they do at home, small incidents like these embedded themselves in our trip to Alaska. When someone is living with dementia, the disease is the ever-present but unwelcome guest. Because we traveled across the country, dementia did too. Because we went on a cruise, dementia came along. And when we came home, dementia joined us—because it never left.  As I wrote a few weeks ago, the presence of our friends Hardy and Barbara made the entire trip much more doable—and much less stressful—for Tom and me. Think about just one scenario: restroom use when someone is LWD. I typically walk Tom up to the door of the restroom and wait outside, but it still scares me because his memory is so short. What if he forgets that I’m waiting for him? Or doesn’t remember which way to turn so he can exit? Family restrooms are helpful not only for those with small children, but because they are both rare and busy, Hardy’s assistance proved invaluable, beginning in the airport before we left.   Before the trip, I learned something that also helped us: The sunflower is a globally recognized symbol for those with hidden disabilities, and many airports—including the two we would visit—train their employees in the Sunflower Program. Before our trip, I bought Tom this lanyard; he wore it to hold his state-issued ID.   Because no one ever mentioned the sunflower, I don’t know if its presence helped us or not. But it made me feel much safer to know he was wearing a symbol that airport workers would recognize, especially if we somehow got separated. (The only time that became an issue was on the way home, when workers took him one way to get through security and forced me into another line, then delayed me while they searched one of our bags. I don’t mind saying that that was a scary few minutes.)  I brought along two more items that made the trip much more pleasant for Tom:...

(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...