Silent Fight

I walked onto the back deck. Surrounded by woods, I could just see the lake between the trees. The view reminded me I was blessed, but I stood there, my mind a blank, unable to remember why I was outside. I waited a minute, but when the memory didn’t return, I walked back into the house. A wave of sadness, frustration and anger washed over me. Going back into the kitchen, I saw the dirty dishes on the counter and realized I was doing the dishes. That’s when I remembered I had gone out to get the dog dishes to clean.

That was a pattern that repeated itself multiple times a day, every day. Senior moments that occurred beyond the occasional frequency that would be normal at my age. I would pick up a book and not remember the pages I had just read. I would sit in church, watching the service, unable to follow the sermon. The words would blur together, and my brain would stop trying to understand. I would volunteer to help so I had a reason to go. I learned that smiling and nodding could replace remembering the names of people I had known for years or even what the heck they were talking about.

Living with cognitive impairment is hard. I’ve heard that people with Alzheimer’s don’t see their cognitive incline. They think they’re fine. This causes a lot of frustration on both sides – caregivers and patients alike. Patients fight restrictions like driving, turning over finances, or even leaving their homes. They don’t understand.

I see what’s happening to me. I see the decline. I’ve made the decision to restrict myself. I gave up driving when I got lost in familiar places, went down the wrong way of a one-way street, and forgot how to put gas in the car. I gave up leading ministries when I couldn’t understand bible studies anymore or what had happened in meetings even with notes. I forget to pay bills even with alerts on my phone and reminders from my wife.

The doctors aren’t sure what’s going on with me although they ruled out Alzheimer’s or Parkinsons. I’m showing frontotemporal dysfunction but it hasn’t progressed to dementia. As one neurologist put it, “you don’t have dementia; your brain just thinks you do.” The memory loss isn’t the primary symptom. As much as I hate it, for me, it’s executive functioning and processing that I struggle with.

There are frustrations. I’ve discovered I not only forget some things, I actually misremember. I’m convinced something happened and the other person is wrong. I thought my mother was having cognitive issues and she fought me. Now I wonder if it was her forgetting or me forgetting. Perhaps it wasn’t her confusion but my own.

I grieve dreams as I find myself saying “no” to doing things I once would have loved. I have a beautiful 2-year-old grandson I’m just starting to know. I want to see him grow up, to be there in his life and share mine with him.

I don’t know exactly what will happen, but I can extrapolate from what I’m experiencing now. The confusion will progress. The memories will fade. I’ll have to stop helping at church. I don’t know what my faith will look like if I can’t serve. My reality has changed. I can’t read a good book or watch a TV show, often forgetting what happened in a previous chapter or episode. I don’t have a timeline because I don’t have an official diagnosis. I see decline but it is slow, praise God! I can’t follow a sermon, but I can serve communion and connect with God that way. I can still write these blog posts. I can still write a sermon. I can’t understand commentaries, but I can speak from my heart. I want to give up but I haven’t yet. I keep going, keep fighting. God’s not done with me yet!

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Photo by Maxime Gilbert on Unsplash