Andrew and Tom, Christmas Eve, 2023 From our wedding day forward, music has been an essential part of our family life. Tom wrote our wedding processional. We had a playlist for my labor with our children long before it was popular to have one. As a family, we’ve collectively memorized thousands of lyrics to children’s and adult musicals, often while riding together in the car. And although none of our children is a professional musician as their dad was, they all love music. The title for this post, in fact, comes from a song I remember them listening to many years ago (Donut Man, anyone?).  We are celebrating double Christmases this year. The first took place on December 25 with my mother (pickup and return to and from Ohio courtesy of our two oldest daughters) and nearby family members. The second will take place next weekend, when all our children except our daughter and son-in-love from Texas will join us for another family celebration. We haven’t yet exchanged gifts with our children; that will happen during the second Christmas. Still, some gifts have already arrived. Even as late as last year, Tom would sometimes tell people he was a professional trumpet player. The truth is, he has barely touched his horn since May of 2016, when he injured his lip during a challenging concert of the Florida Worship Choir & Orchestra (Tom is one of two first trumpet players in the linked video of one song from this concert). I wrote here about how what I now know was emerging dementia kept him from a full recovery, effectively ending his trumpet career.   Although he used to play simple songs for our grandson, he has not done that for more than a year, and he rarely touches his trumpet. This may not seem unusual, but his practice was so consistent for so long that my children and I can all sing the notes of his Stamps-Baxter warmup. While working as a pastor and worship pastor, he continued to perform and to teach trumpet, instructing hundreds of trumpet students over the years. He had only one failed student: our son. After several months of working together, he and Andrew agreed to part musical ways, and Andrew went on to other areas of interest.   That was true until dementia happened to Tom and then the pandemic happened to the world. During that terrible season, God gave Andrew the idea to help reawaken his Dad’s interest in trumpet. He bought a horn and, via YouTube, restarted his trumpet instruction. As he improved, he started connecting with his Dad via Zoom, and they used that platform to practice simple duets.   But Andrew’s efforts failed...

Tom uses his trumpet to draw people to the area where our mission team would present a gospel-based drama, San Jose, Costa Rica, 2014. A few years ago, I lived a much different life in a different place than the one I have right now. Living near Orlando, Florida, where Tom served as a worship pastor, I worked as a freelance writer and editor as I do now, but since Tom was the primary breadwinner, it didn’t matter that my income went up and down with the assignments. As my children grew, I traveled, often to teach at Christian writers conferences across the United States.  But the travel I enjoyed most was a luxury I no longer have: going overseas to serve in missions and write the story of those trips, either in online blog format or in print. I consider any assignment that combines my love for young people, prayer, missions, and writing a huge win, and these trips, designed to give students a short-term missions experience, provided all of that. Once, I brought Tom along on a trip to Costa Rica; he had led international mission trips with the various churches we had served, but we had never gone together before—a bonus blessing. Another time, I had the opportunity to serve alongside our youngest daughter in Panama for the final ten days of her five-week trip, another bonus blessing. At least for right now, the international travel is no more. The up-and-down income is no more. But the blessings of those trips continue, largely in the form of relationships. Thanks to those trips, I have friends across the U.S., Canada, and Latin America (where all of my mission trips took place). And those friends—many of whom were high school or college students when we met—continue to encourage me today.  What does this have to do with dementia? A lot. Not only has Tom’s life changed with the onset of his disease, but mine has too—in the ways listed above and more. I tend to live on the side of hope and not discouragement. But as his disease progresses, I do have moments, even seasons, of concern. Not long ago, my mother had some health struggles at the same time as I saw some sudden declines in Tom. I found myself in need of extra rest, and at first I couldn’t figure out why. But before long, I realized: The internal stress was wearing me down.  I didn’t find an immediate fix for my situation, but the habits I already have in place kept the issues from escalating. God also provided help in ways I had not expected: Understanding words from family members. A special opportunity to reach beyond my problems...

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 Dementia steals. Dementia kills. Dementia destroys.   Those of you familiar with Scripture will recognize that these are all tactics of the enemy of our souls. I have no doubt that Alzheimer’s and all dementia originates in his domain.  But with or without familiarity with Scripture, you’ll recognize that I am a person of faith—a faith that has sustained me while Tom is living with dementia. As a result, I believe God can bring good for him, for me, and for others even in this present darkness.  Dementia has indeed brought some positives into our lives. Many of these are small—but then again, small things are often the most essential. Here are a few ways the fact that Tom is LWD has added to rather than subtracted from our lives. Dementia has:  • Moved me into a new position of strength. As I’ve written before, throughout our marriage, I too often stayed in the background, letting Tom take the lead even in areas where I was potentially more capable. Dementia has forced me to assume more responsibility, to do more and, more importantly, to be more than ever before. In this way, it has helped me grow into the person God knew I was all along.  • Brought our family closer in fresh ways. I don’t think we “needed” dementia to help our relationships; we were already a loving, caring, imperfect family who enjoy spending time together. But without dementia, I doubt we would have moved as close to two of our daughters as we live now, much less had our son move in with us for a season. I doubt we would see our grandsons as regularly as we do or had the opportunity to attend so many ball games, school events, and birthday parties. We wouldn’t have heard first words or seen first smiles. We wouldn’t have had the opportunity to see our kids and their spouses step in when we had no choice but to call for help—both now and in times to come.  • Moved us to the receiving end of ministry. We’ve given days and years to serving God, often through the church. For the first time in most of our forty-year-plus marriage, we now give much less than we receive. In the simple prayers Tom prays with me at morning and night, he almost always thanks God for our church. I know the gifts of relationships and kindness the many friends from our churches, past and present, bring our way lie behind his gratitude—and mine too.  • Slowed us down. For our final years in Orlando, Tom and I were both working full time—and for me, that meant my first time of...

Tom, age eleven, plays his first nightclub job. Just as my brain is wired for words and language, Tom’s is wired for music. He has always been the guy who noticed the music in the store or restaurant that most of us hear only with our subconscious. In fact, if said music wasn’t to his liking, which was often, he was also the guy who would ask, maybe even insist, that the person in charge turn down the volume.   He was the guy who could instantly create—and play—a trumpet descant for any hymn.  He was the guy who wrote our wedding processional for five trumpets, two trombones, and a snare—and arrived at the church at 8 a.m. the day of our midmorning wedding to rehearse the musicians one final time (I believe some doughnut bribery may have occurred).  And he was the guy who had to sit through all the credits to every movie so he could see who wrote the score and which musicians played which parts.   Tom has spent much of his life making music. He has played the trumpet since he was nine years old. (I think most of our friends in Seneca can tell the story of him playing his first nightclub job at age eleven—they’ve all heard it a time or three.)   He no doubt started singing at an even younger age. One summer in high school, he attended a music camp as a trumpet player and was picked for the select choir as well as the band. During seminary, he took time out to play his horn for two different Christian music groups, one of which was renowned contemporary Christian music group TRUTH. For the other group, he also served as keyboard player and music director. Only in college had he discovered what was probably obvious to his early music instructors: He has perfect pitch.  Despite this obvious musical passion, he earned a Master of Divinity with full intentions to become a pastor-teacher, which he was for a number of years. But the pull to music was too strong. Ultimately, he shifted from being a senior pastor who could also do music to a worship pastor who could also preach.  Now, he can no longer preach, and he doesn’t seem to mind. But music remains important to him. One gerontology nurse told us his musical aptitude would be one of the last things he would lose—both because the brain of the person LWD often retains music better than other abilities and because of how important music has been to him throughout his life.   This should help explain why, despite my self-proclaimed lowering of expectations, I’ve struggled to let go of my...

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...