Snapshots of Dementia: The Best Present of All

Posted by Marti on December 30, 2023 in Dementia | 12 comments

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 to increase Tom’s interest in his former passion. He would play his horn when our son took the initiative, either by Zoom or in person, but unless Andrew reached out, no  practice would occur. If I reminded Tom, he might or might not get his horn out—and even if he did, he would play for no more than a few minutes. Gradually, I gave up the hope that he could return to playing. 

Over the past few months, our family and friends have watched Tom take a steeper nose dive. Simple questions or instructions confuse him. He still sings with the choir and senior adult choir but can no longer follow the written music. In some recent cognitive testing at the Emory University Brain Health Center, several areas remained unexamined because, as the report said, “Patient was unable to complete sample.”  

But—because or in spite of all this—this month, Andrew decided to do something he has always wanted to do: Play a trumpet duet with his dad in public. He talked to Christopher, our minister of music, and they scheduled the performance for Christmas Eve.  

When he first suggested this idea, I was pleased, but unsure. Andrew has still had only limited trumpet instruction, and although Tom retains his beautiful, pure tone, he has limited ability to concentrate. How would either one of them manage this?

I didn’t know, but I did pray.  

How it was planned: Tom and Andrew would play the first verse, then Tom and Christopher would lead the congregation in song while Andrew continued playing. That would take the pressure off Tom; we know he can still sing well, and Christopher’s strong voice would make up for any gaps. 

How it went: Tom and Andrew played the first verse, and the congregation (with some of our friends in tears because they hadn’t expected the duet) applauded. Tom didn’t remember the plan, so after the applause, he continued playing alongside our son while Christopher and the congregation sang. When Tom’s legs failed him, he grabbed his walker and sat down on it, joining back in to play right on cue. 

Andrew, not Tom, broke down afterwards, overcome by the emotion of their accomplishment. (Tom was kind to Andrew but seemed to regard this as just another worship service.)  

Andrew, not Tom, recognized how rare and precious a moment this was. (Tom said nothing about how long it had been since he had played in public.)  

Andrew, not Tom, understood that by next Christmas, such a duet might not be possible. (Tom increasingly lives in the moment, so any thoughts of either past or future are rare.) 

Trumpets are often used to “herald.” In fact, herald or fanfare trumpets announce the presence of a president, king, or other dignitary. Scripture gives us several instances of trumpets being blown—sometimes by angels and sometimes by others—to send an important message. 

This Christmas Eve, our family’s two trumpets sounded one important message: “Glory to the newborn King.” And I call that the best present of all.

For the past few years, dementia has been a largely unwelcome guest at our holiday celebrations. Has God given you an unexpected gift, such as the one we had, despite the fact that someone you love is living with dementia as Tom is? Feel free to share in the comments below or on social media. Our story matters, and so does yours.