Ukulele Tunes

A while back, I happened to be at the facility when the music therapist arrived to sing and play for my husband. The young man who was originally assigned to him has now been replaced by a young woman, and she's just as sweet and kind as can be. She selected a few tunes from my husband's youth, and I sang harmony to her melody. It was fun.

The thing is, I noticed how my husband's eyes lit up as she played and we sang. It dawned on me that listening to recorded music is nice, but it isn't the same as live music. The interaction is on a different level entirely. While my husband certainly liked the iPod playlist, there was more opportunity to catch a moment of clarity and connection with live music. So, I decided I would pick up our guitar and learn a few chords.

There was only one problem with that. The instrument, a classical acoustic guitar, was just too big for me to lug around, and my unaccustomed, clumsy fingers couldn't manage the string and fret distances. I tried. I failed. Don't judge me; I may return to fight another day.

Enter the ukulele! It arrived a few days after I ordered it online, and I learned three or four chords right away. Did you know you can play and sing a bunch of songs with only three or four chords? A few days later, I arrived at the facility with five whole songs in my repertoire. I tried to stay in a quiet corner with my husband for his "concert," but other residents gathered around for the entertainment. My playing was awful; but, on the plus side, my singing left something to be desired. They loved it.

In the ensuing weeks, I've learned more chords and more songs. Unfortunately, my husband appears to be in a declining state of engagement that seems to have started around the first of the year. I feel as though I've been a day late and a dollar short. Last Friday, he was on his bed in his room when I got there. I was happy to be able to spend some "alone" time with him, just the two of us. He almost started to smile when I greeted him, but didn't or couldn't, and he just turned away, vacantly looking up at the ceiling and over at the wall as I sang and played some familiar songs. Perhaps he was wondering who I was.

He didn't react much at all until I softly played "Nothing But the Blood of Jesus," an old standard written by a Baptist minister named Robert Lowry in 1876. And then he tried to whistle. The faint sound barely escaped his lips, but it went straight to my heart. 

At the end of each visit, I say the Lord's Prayer while holding my husband's hand, and then I pray Psalm 23 over us; but, this time, I began to sing the Lord's Prayer instead. As I did so, I noticed that he was folding his hands as if in prayer. I continued to strum the ukulele and hummed quietly as he fell asleep and started softly snoring, his folded hands relaxing and dropping to his chest. What a beautiful, peaceful moment it was.

My husband's body may be failing him. His cognitive ability may have left him. He is completely helpless and at the mercy of others for every aspect of daily living. But there is nothing wrong with his spirit.

The Whistler

February 5, 2020

He whistled for the first hour and a half of my visit today. He's been whistling a lot lately. Whistling while pacing. Whistling while sitting. Whistling while lying in bed. Whistling to music. Whistling to no music. Whistling loudly, whistling softly. Whistling so much that one of the other residents tells him to be quiet. This request has no effect on him whatsoever, obviously.

It's interesting. I don't remember him being an avid whistler in the past, or even whistling enough for me to notice. He's actually a pretty good whistler, and that brings back memories of my father, who whistled and sang all the time. He could do lots of bird calls. When he whistled a tune, you recognized it. While these memories are pleasant, they also stab me in the heart. My dad had dementia, too, for years.

Even though each case is different, you can't help comparing one to the other. "How long had my dad been ill when he started doing this," I wonder to myself, or, "After this behavior started, how long did my dad live?" It's a morbid obsession, I suppose, but there it is.

One of the things people who are wired like I am want to know is what's coming up next. We want to know how long it's expected to last, and we want to be prepared for what's happening after that. We can handle whatever it is, so long as we know what it is. The path of this disease holds no such comforts. It holds no promises or timelines. For some, the disease runs its course with breathtaking speed. For others, not so much.

The estimate I was given when my husband was diagnosed* has come and gone, and so it feels as though we are in unchartered territory. Keep on whistling, my darling.

*He was diagnosed at the beginning of April, 2010. So, we're ten years "from diagnosis." He's had the disease longer than that, of course.

The ID Card

Written February 22, 2020


My husband's driver's license expired shortly after he'd already been placed in a facility. I had made a failed attempt to get him an official identification card at the time ("No, he can't come in himself. He's in a memory care facility. Can't you use his existing picture?!"). I had sent in the required paperwork, but it had been returned with numerous things to correct and a request to refile. He hadn't been driving for several years, and he still had a valid passport. So I let it slide.

Being heavily stressed at the time, I had put the resultant paperwork "somewhere," and I didn't feel any real urgency to try it again right away. I figured we could always use his passport, if need be. But with his passport now expiring soon, it just didn't feel right to not follow through with the card. A person should have valid identification, though I'm not sure why exactly. He'd always had a driver's license for his entire adult life, and I supposed a Senior Citizen Identification Card could come in handy at some point. Besides, the situation was adding to my general nervousness. I decided to check this item off my list of things to do.

Miraculously, a month ago, I found the manila envelope containing fresh forms along with the rejected ones. I carefully completed them, taking into account all the things I'd done wrong the first time, and then I went to the Department of Motor Vehicles to get the job done. With some amount of trepidation, I submitted the forms to a nice young man who said everything looked like it was in order, and the card should arrive in a month or so. While this should have been comforting, it wasn't. That's what they had said the first time!

I waited for the mail to arrive. Had I made a mistake in the paperwork again? Would it be returned for refiling again? I berated myself for not taking care of business immediately the first time. And I waited.

Today, there was an envelope from the DMV in the mail. It wasn't a giant manila envelope; it was a No. 10. It didn't weigh much, but there was a hard item in the middle. Holding my breath, hoping for the best and preparing for the worst, I opened it.

His official ID has arrived, complete with the same beautiful picture of my handsome husband that was on his driver's license. I'm so relieved.