Even as I Lose Pieces of Me to Dementia, There Is Some Joy

I’ve always been a self-talker. When I was little, my mother scolded me constantly for talking to myself out loud. I’m not sure why it bothered her. Perhaps it broke the silence of the vast North Dakota plains too much for her liking.

As a result, my monologue turned internal. A running list of ideas, next steps, action items, notes for storing deep in my memory box; my brain has been in self-talk mode from waking to sleep for my entire life.

But now, there are moments of silence. They came on slowly, a second or two here, five minutes there. The stretches where my brain is empty, my internal voice silent, have become more frequent.

My Inner List Maker Has Been Silenced

I know these silent stretches are a result of my dementia. At first, they were scary, lonely, and hard to get used to. I’ve had to compensate for the loss by writing myself endless lists, setting reminders on my phone, and even talking to myself out loud again (sorry, mom).

Everyday tasks are still fairly automatic, and I can get through them fine by myself without my internal voice, but I used to have a reliable partner to give me specific direction like, “Okay, it’s 5:14 a.m., you have X, Y, and Z to do today. Let’s get Z done first and then you can get X started. Also, don’t forget to plug A, B, and C in there, too. Oh, and the kid needs a helmet for skating lessons.” On and on until all tasks were accounted for and mapped out.

Once the internal list was written and I was on task, my brain would tell me stories. “Here we are getting the helmet! Remember when you ice skated on the cow pond and fell through and lost a skate and had to walk a mile back home all wet. You almost lost some toes.”

The stories are less frequent now, the running monologue of to-dos less reliable. I have to strain to order tasks and plan contingencies. Sometimes I feel disheartened that I’m not able to count on a thing that has been such a helpful resource. Sometimes I feel really lonely. I miss my voice.

The Stillness Can Be Peaceful, I’m Finding

But here is where I’ve been trying to find joy. Sitting quietly, enjoying the interior silence.

Ever since mom imparted to me that talking to yourself out loud was not okay, I’ve been outwardly quiet. Now there are long stretches where I can be silent both outside and in. Blank inside, no commentary, just silent. It’s annoying when it happens and I don’t want it to, but I’ve been learning to live with it and turn it into moments of peaceful joy.

Just sitting, still and silent, letting my mind truly be still. I joke with myself sometimes that it takes most folks years of practice to master this kind of zen, and all I need to do these days is let it happen. Turn the tables on the loss of my voice by calmly fighting against the anxiety of losing this important piece of myself and enjoying moments when I’m not in my own head.

Yesterday, as the sun rose over the lake next to my house, I sat and just looked. I didn’t order my daily tasks, I didn’t think about the most efficient route to take for the errands I needed to do later, I didn’t “remember the time when.”

I was just present and quiet inside and out. I watched the sky lighten, the lake ripple, the trees turn from dense dark shadows to glowing filters for the golden light of the morning sun. My internal monologue was silent, as birdsong filled the spaces where to-do lists were usually written.

Dementia is giving me silence and teaching me to appreciate new experiences, giving me joy even as I’m losing pieces of me.

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