Gratitude for Every Note
For the last three years, I have been traveling to different nursing homes and assisted living facilities around the county to play music for adults with Alzheimer’s, dementia, and other neurocognitive diseases. This is the sort of thing that makes people think that I am a very good person. In that, I think there’s a lot to unpack.
There is a very particular sadness that emerges from interacting with people with dementia, especially over long periods of time. That comes along with watching a person disappear in tiny, infinitesimally small pieces every day, like a block of marble chipped away by the world’s slowest and cruelest sculptor. You mourn for the person you lost that day, that month, that year- knowing that even still, there will be more to lose.
More than sadness, though, emerges a very particular kind of fear- the kind of fear that lives within every person, the kind of fear that comes from a place so dark that we cannot bring ourselves to face it. It is so universal that there’s even a market for it, companies to sell us puzzle books and “memory supplements” to stave off the unthinkable. To lose oneself- and worse even still, to be aware of slowly losing oneself in the early stages- is akin to watching the water rise in a room around you, knowing that before long, you will certainly drown. Being around an Alzheimer’s patient forces you to consider your own mortality, to reckon with who you will be when you aren’t you anymore, to confront your nightmares as they stare back at you. I think it is this fear specifically that leads people to believe that I am brave for choosing to subject myself to it.
In truth, though, on an average day, I gain much more than I give. There is one particular man, who for the sake of privacy will be called “Roland” here, who I use as an example for everything I love about my job. For background: pre-pandemic, I worked with Roland for almost a year. He had dementia but was able to hold a conversation and still had a vibrant, loud personality. Every time he would greet us, he would break into a loud rendition of O Sole Mio (he only knew those three words) and loved to join in singing Besame Mucho (again, he only knew those two words). During the worst of covid, we didn’t see him for about a year. Six months ago, we returned and I, naively, expected to return to the same Roland. This new Roland was unrecognizable- almost entirely nonverbal, very often asleep in his chair, and spending most of his waking hours wandering aimlessly around the facility. One week, he walked into our session with his face covered in dried blood, a remnant of a fall that had left him in the hospital just a few days prior, and I cried openly in front of him. (Okay, I promise it gets less depressing here) In our sessions now, Roland often sits off by himself quietly, but every once in a while, I get to witness a glimmer of something truly remarkable. You have to watch closely or you might miss it, sometimes it’s gone within seconds. I’ll sing You Are My Sunshine and he’ll smile at me, the same smile he’s always had, and sing along to a verse or two. It is difficult to describe what that feels like. It is a delight so intense and pure that I have never experienced anywhere else. I live for it. Roland’s declining state makes me savor those small moments, knowing that they are fleeting, and just exist simply in that moment with him. I feel grounded in joy, in knowing that are still beautiful moments despite tremendous sadness, in gratitude for every note he sings with me.
And this is something I am able to experience every day. The hard days are hard, sometimes unbearable, but those incredible moments I’m given are what I will carry with me always.
