Snapshots of Dementia: Do Hard Things

Posted by Marti on December 10, 2022 in Caregivers, Dementia | 4 comments

Do hard things. 

So reads the plaque on my office wall, courtesy of my two former “work daughters.” That phrase became our mantra as we learned that God often calls us to the more challenging choices, those more difficult, more sacrificial, and often, more right. 

He calls us to do hard things. 

For me, that sometimes means handling insurance, tax, or other details I’d prefer to ignore. Sometimes it means interrupting my work multiple times a day to help Tom with a word game or find a (temporarily) lost item. Sometimes it means taking on yet another household task he can no longer perform. 

And sometimes it means helping him tackle a challenge I’m not sure he can handle. In the past, if such a situation occurred while I was raising children, I might have said I was giving my child the freedom to fail.  

But Tom already experiences small failures multiple times a day. When I help him do hard things, I’m giving him the freedom to succeed—even if success doesn’t look the way it used to. 

For most of his working life, Tom served as a senior pastor, then a worship pastor/minister of music. He also played his trumpet professionally for churches and other venues. As a worship pastor, he planned and directed a number of Christmas productions, some with three performances per Christmas season and components including drama, lights, and sound as well as choral work.  

This year, when our worship pastor announced that our choir would combine with two others for a community Christmas presentation, I felt both excited and sad. The music came from one of Tom’s all-time favorite arrangers, but the production was shorter and less complicated than the ones he had directed. Yet as I read over it, I knew it might still be too much for him. 

I wondered about his physical ability. I knew he wouldn’t be able to stand for much of the time, but I also knew that, just as he used to tell his choir members, it would be fine if he sat.  

I wondered about his emotional ability. How hard would it be for him to “only” sing when, just a few years ago, he had directed similar productions? 

I wondered about his cognitive ability. During our regular choir practices, I’d noticed him struggling to follow along with his music at times. How would he handle this more difficult score?  

Tom accepted the idea of the Christmas production well—not enthusiastically, but he rarely shows enthusiasm anymore now that he is living with dementia. Before long, he told me he wanted to try out for a solo. 

What? I’m wondering if he can even sing in the choir, and now he wants to do a solo?  

That was my first thought.  

My second thought—after getting an enthusiastic response from my minister of music when I asked for his input—was a resolution to do hard things. And to help Tom do them too.  

What did this look like? 

— Helping him choose which solos he might attempt and receiving/downloading the tracks so he could learn the parts. 

— Reminding him/helping him practice both for the audition and for the program—and rejoicing with him when he was awarded a small solo. 

— Reminding him of specific words in his solo and helping him play the track and practice it whenever he and I went over the production in full. 

— Praying and asking others to pray that everything would go well, especially since I knew it might not. 

We shared “The Grace of Christmas” twice during the first weekend of December. The day of our first presentation, Tom told me he didn’t want to depend on his book but would try to sing the part from memory.  

He has a hard time with the words even when he reads them right from the book. What is he thinking? 

But of course, his dementia means he is not thinking, at least not logically. In his mind, this idea made perfect sense.  

“Maybe take the book along when you go up for the solo—just in case,” I suggested. 

Thankfully, he didn’t recall his earlier words about not using his book—and sang beautifully both times. 

Tom has a fairly flat affect (blank facial expression) much of the time. Even when I tell him something significant, I often receive a blank stare. But when he sings, his emotion shows—on his face and in his voice. 

I felt prouder of Tom and more grateful to God for that one tiny solo than I did after he directed some of the huge musical productions of years gone by. I don’t know what his ability will be by next Christmas, which is one more reason I’m thankful that this year, with the help of many others, we made the choice we did. 

Doing hard things can allow you to help others. Whether you’re living with dementia or not, doing hard things can also allow you to help yourself. And—perhaps especially when you are living with dementia—doing hard things allows you to bring glory to God in heaven, because there is no way on earth that you can accomplish those hard things on your own. 

Tom and I won’t always be able to make this kind of choice. But for this time and on this occasion, I’m glad we chose to do hard things. 

If you or someone you know is living with dementia, how have you chosen to do hard things? This may look similar to or very different from our choice. Feel free to share your thoughts on social media or in the comments below. Our story matters—and so does yours. 

P.S. If you would like to see/hear Tom’s solo, find the Facebook Live video here. Tom’s solo begins at 30:28.