Tom playing his first trumpet gig, c. 1969 We refuse to let this thief steal our faith, our marriage or our family, but he has already taken Tom’s ability to work, drive and play his trumpet. The above words come from my November 2019 Facebook post, the first time I shared publicly about Tom’s struggles with early-onset dementia. If you’ve read my recent blog posts, you understand why I referred to dementia as a thief. But how could it steal his trumpet playing? Isn’t that something he could do in his sleep? One would think so. Trumpet playing has been such a part of Tom’s identity that most longtime friends don’t think of him apart from his trumpet. He began playing in third grade at age 9. By sixth grade, he played his first nightclub job. And by junior high, he was one of three students marching with the high school band. Tom still has a T-shirt imprinted with “Band Nerd,” and no description seems more accurate. All-city, all-state; you name it, and he did it. The kid who used to listen to Herb Alpert albums a few notes at a time, write down what he heard and then play the songs didn’t even realize he had perfect pitch until a college professor identified it. But his favorite expressions of music always involved worship. Years ago, I remember a dear woman of God saying Tom had a special anointing when he played for worship that was far greater than his natural ability. I fully believe this statement. Over and over, I saw his playing touch people’s hearts in powerful ways. Tom playing his trumpet on a mission trip to Mexico, c. 2002 In May 2016, before we ever saw a neurologist, Tom was one of three lead trumpet players for a special recorded concert of the Florida Worship Choir & Orchestra. He had a busy few weeks before the concert and apparently didn’t practice enough. When the evening ended, he knew he had injured his lip. He iced it during the concert and on the way home. “I can’t play,” he said. “I’ll have to let it heal.” And so he did. For weeks. As part of his sixtieth birthday celebration, I gave him a summer trip to a trumpet camp run by one of his longtime trumpet heroes: Malcolm McNab, who played lead trumpet on thousands of movies and television shows. For Tom, this was the gift of a lifetime. But should he go with his injured lip? He called to cancel, but Mr. McNab graciously convinced him to come. And Tom was so thankful he did. Not only did he get to spend time with his college...

I know You’re able and I know You can/ Save through the fire with Your mighty hand/ But even if you don’t/ My hope is You alone. I sang along with MercyMe as I drove to work, my voice quavering as the tears streamed down my face. Why did I even bother putting on makeup? It’s a good thing I have a long drive. Lord, give me the strength I need. This scene repeated itself in my car almost every morning during the late spring, summer and fall of 2017. But why? Hadn’t the neurologist reassured us only a few weeks before? Yes, by the doctor’s standards, Tom was fine. But more and more cracks showed up in his life. As the days went on, some of these revealed themselves as fault lines. As they widened, the elements around them threatened to collapse. Our communication. Tom’s job. Our finances. Our marriage.   I love my husband and want to honor him. I pray that nothing I share makes anyone think less of this loving, creative man created in the image of God. But I also feel compelled to warn people of the potential effects of a disease I believe comes from the pit of hell. Strong words. But words from the heart of a woman whose husband of more than 30 years went from caring and committed, leading others to walk in faith, to falling prey to various online scams, often with a sexual connection, and showing decreasing interest in both his family and spiritual things. One day, he called me at lunch. “Someone is blackmailing me through Facebook.” “What? What do you mean, blackmailing you?” “They’re threatening me. If I don’t pay them, they’ll post on my wall.” “What are you talking about? Who cares if they post about you? No one will believe it anyway! Of course you shouldn’t pay!” But he continued in an increasingly frantic tone, telling me about connecting with someone he said was a woman and that if he did not comply, “she” would post a video he would never want anyone to see. I took a deep breath. “You’re on your own. Do whatever you want.” And for one of the few times in my life, I hung up on my husband. Through my shock, I realized Tom had a serious problem. But I had long believed God would make up for any perceived lack in my life. I could trust Him. Hence the MercyMe song. The tears. The prayers. Tom did pay the money, and he said the police told him nothing could be done. But this action and others that followed moved me to do something that helped me survive...

Tom and I sat in the stiff-backed chairs at the neurologist’s office. After months of delay, he had told his primary care doctor he might have some memory issues. That doctor scheduled an MRI and referred him to a local neurologist. A few months before, I had taken a full-time job with a publishing company—the first time I’d worked outside the home since our oldest daughter was an infant. I had homeschooled our five children for a total of 21 years and, when our youngest was a preschooler, begun a freelance writing and editing career (see the rest of this website if you want to know more). But now our two youngest daughters were in college. I had no desire to leave home, but I felt a new compulsion to get a “regular” job. Deep down, I wondered how much longer Tom would be able to work, and although money had never been my primary motivation, I realized a regular salary and benefits might help. I had no way of knowing how much or how soon. That day, I took off work to accompany my husband, my only sure way to receive an accurate report. At the neurologist’s office, Tom was “on” in ways that had become less frequent, charming every office worker and medical assistant. The neurologist, however, was not as easily charmed. For some reason, he hadn’t received the MRI report (although we later learned it showed nothing unusual). He then asked Tom the reason for his visit. “I’m having a few memory problems.” The doctor pressed further. “Have they affected your family?” “Not really. Maybe sometimes.” “Have they affected your work?” “No. I have a good assistant.” “So your memory problems haven’t caused any issues with your job?” “No, none at all.” The neurologist asked a few more questions, almost all of which Tom answered much more casually than I would have. My frustration mounted. How can he say this isn’t affecting his job? I had noticed numerous times when he forgot things or failed to complete tasks. In fact, if it weren’t for his capable assistant, he would never have been able to keep up. But the neurologist didn’t ask me any questions. When I tried to comment, he pivoted back to Tom. Soon, he began a brief memory test. Tom missed some questions and did well on others. And since the test was short, we got immediate feedback. “You do have some problems with your memory. Many people have this, and it never gets any worse. I imagine that will be the case with you. Don’t worry. But come back in six months, and we’ll see how you’re doing.” Although Tom and I rejoiced...

“Watch carefully.” “Keep a list.” “Keep a journal.” That’s the traditional advice given to people who suspect a loved one shows signs of dementia. Even after Tom’s surprise party and the revival of my concerns, I didn’t keep a record of his struggles. My nagging thoughts came and went. And his previous diagnosis of adult attention deficit hyperactivity disorder (ADHD) didn’t help. I remember telling myself and at least one neurologist, “Maybe this is just what aging looks like in someone with ADHD.” But a day came when I did start keeping a list. This lasted only a month or so because it became almost like the situation when someone says, “I think this milk might be spoiled. Could you check it?” I find myself unable to taste or smell anything but spoiled milk—even if it’s perfectly fresh. When I was looking for dementia, I found all sorts of problems. And it hurt to think I might find symptoms and signs where there were none. So I stopped keeping my list and even deleted it. But I do still have notes here and there along with memories, which at this point are more intact than not. Dementia is a diagnosable condition made up of many small elements. I noticed the following signs in what I now call the “early days,” when I still wondered whether something was wrong: —Distractibility/lack of focus: My husband seemed to move away from a task and on to another more quickly than in the past. He left more things unfinished and undone. I knew this was true at home, but eventually, I realized it was also affecting his job. —Hesitancy in speech: Tom’s speech became more and more halting. I realized how much he struggled for words one night when, during a choir rehearsal, he mentioned a previous mission trip to what he (after a long pause) called the “left side of Canada.” As people laughed, I cringed—and added this to my mental list. —Forgetfulness or inattentiveness: Our dear next-door neighbor messaged me more than once to ask if we knew our garage door was open. No, we didn’t, but yes, Tom had forgotten to close it when he went to work. Two or three times, he left the front door of the house wide open as well. People grew accustomed to reminding him multiple times about nearly everything. —Exhaustion: He would come home from work so tired he could do nothing but sleep for a couple of hours. He would get up for a short time and then go to bed early. Normal aging, or a sign of a problem? I had no idea. —Withdrawal from social situations: Tom had always been a...

Tom and Marti at his surprise party, March 11, 2016 When Tom turned 60 in March of 2016, our family threw him a major surprise party. I wanted to make it special because I’d never really held a big party for him before, and his father died at age 59 of a massive heart attack so we all saw this as a milestone birthday. The evening included family, friends, food and (no surprise to anyone who knows Tom, a longtime professional trumpet player and worship pastor) a music theme complete with vinyl records lining one wall, note-shaped balloons atop black-and-white balloon towers and a musical staff where friends could write their own notes on (you guessed it) notes! I would never have pulled off such an incredible party without huge help from all of our children (forever kudos to our daughter Kristen, party planner and decorate extraordinaire). We scheduled it two weeks before his actual birthday because our two youngest daughters, both still in college, had spring break on successive weeks, and the weekend in between was the only time we could guarantee they could both attend. However, I could have pulled off the surprise element on my own. Even then, Tom’s mind did not hold onto dates and events. For at least a year before this, I had begun to wonder what might be happening with him. That night, I only needed one small lie to get him to the nearby church venue. “Remember? It’s David’s (a mutual friend’s) birthday, and they’re having a surprise party for him. I asked you, and you said we should go.” Of course, no one had invited us to this nonexistent party, and we had never discussed anything about going to the church. But I knew he would think he’d just forgotten one more conversation. Everything happened exactly as I thought, and we walked into the fellowship hall as scheduled. What happened next gave the party a personal subtext I’ll never forget. As we stood at the door with all our children along with many friends calling out, “Surprise,” I watched Tom turn and stare. Turn and stare. Stare some more. He looked at me. “These people don’t even know David,” he said at last. I stood on tiptoe, gave him a hug and whispered, “This party’s for you, baby. It’s your surprise party!” Only then did the understanding come over his face. But for the next 10 minutes or so, he still seemed in shock. Later, he said he was so surprised that he couldn’t process it all. And I don’t doubt that a bit. But what I also believe was that his brain was already showing definite signs of decline,...