Dementia Posts

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 expectations regarding Tom and music. I would tell myself and others. “He may remember his music when he doesn’t remember me.” 

I love singing with Tom in our choir and senior adult choir, and I have an adequate voice. But of the two of us, we both know he is the real musician.

Today, after LWD for several years (we’ll never know just how long), he retains his perfect pitch, beautiful tenor voice, and ability to play the trumpet, although lack of practice has taken an obvious toll. But he is losing the ability to follow a musical score.  

A few months ago, when the people who normally sat next to Tom in choir were absent, I moved nearby to make sure he had the music he needed. I was surprised to notice that he wasn’t always keeping up with the notes on the page. My husband, sight reader extraordinaire, struggling to follow his music? Even the knowledge that he is LWD did not stop my shock. 

Tom is good-natured about most things, just as he always has been. But he is not so good-natured about receiving correction from his wife. And my gently pointing him to the right page? Let’s just say that does not go well. At least I knew better than to mention that he was singing along with my alto part rather than his tenor one. But still—his confusion surprised me. 

Our friend Hardy (you may remember him from our Great Alaskan Adventure) and I thought we had found a good solution. I would stop acting as Tom’s choir buddy. Whenever he could, Hardy would sit beside him and give him any needed guidance, which would also include helping him in and out of the choir loft, making sure he didn’t leave his music folder behind, and so on.  

As expected, Tom receives this much better from Hardy than he does from me. And Hardy, just as he did on our Alaska trip, continues to assure me that he enjoys helping Tom. Win-win! 

But we all miss rehearsals sometimes. At a recent choir practice, Tom had no Hardy—and no one else—to help him. In fact, the man who sat beside him that night has Down syndrome. When I saw Tom trying to assist this man, I made the decision, despite my previous agreement, to come and help. 

Evening rehearsals are an increasing challenge because of Tom’s sundowning tendencies. That day, he had endured an early-morning allergy shot and an afternoon dental appointment, interacted with others at our church supper, sat in while I taught children, and helped with children’s choir.  

Yes, he was worn out. Yes, I should have known better than to expect him to receive my assistance. But no, I did not.

After several rounds of trying to help while Tom either did not understand or did not receive my words and we both became increasingly impatient, I did something I have rarely done: moved beyond frustration to exasperation. After the rehearsal was over and he had left the room for a moment, I expressed that exasperation to others: “I can’t take many more rehearsals like this!” 

I can’t. And neither can Tom, nor should he. After all, as I explained last time, those around the person who is LWD—not the person LWD—must make any needed adjustments. 

For now, we are instituting a no-expectations policy. We won’t worry if he’s not on the right page in his music.

We won’t try to correct him.

We will (if our name is Hardy or another man’s name) make quiet suggestions if he seems amenable.

And we (especially if our name is Marti) won’t stress if he doesn’t. 

As our worship pastor and his wife wisely pointed out, Tom still sings beautifully. So far, he rarely does so when he’s not supposed to. And the errors he makes are not distracting anyone except possibly his micromanaging wife, who is learning, albeit slowly, to lay down her expectations. 

Yes, a day will come, probably sooner than later, for Tom to give up the adult choir and sing only in the senior choir that ministers at nursing homes. But when we make this change, it will be a mutual decision based on what is best for him, for the choir, and for the church—not my frustration or misplaced expectations. 

We had another choir rehearsal this week with no Tom-helper available. I sat nearby but, other than giving him the correct music at the start of the rehearsal, did not offer any assistance or indicate that I noticed he was often on the wrong page. For the most part, he remained quiet while the rest of us sang. And although my heart broke even more than it did on the night of the terrible, horrible, no-good, very bad rehearsal, I knew that this time, I had done the right thing. 

I learn new lessons each day about how to be the best care partner for Tom. And as you can see, I don’t always learn well. I am grateful for the help of so many others who love him and want him to continue his ministry in song. He’s still wired for music—even though LWD means some of those wires are crossed. 

If you or someone you know is LWD, how is music a part of your life? Have you noticed someone who is LWD retaining their music abilities even after others have faded? Have you felt frustrated when trying to “help” someone who is LWD? What did you learn through this time of frustration? Feel free to share your thoughts in the comments below or on social media. Our story matters, and so does yours.