Grief

When I preached last Sunday, I said the words, “I have dementia”. I have been using the diagnosis ”frontotemporal degeneration” as if that shielded me from the reality that I have dementia, the reality I don’t want to face. But I said the words. I faced my fears. I accepted my fate. There is still a lot of unknown. I have more specialists to see but all the tests point to FTD. I qualified for disability. My brother, who also has disability, said it’s strange but the reality of the government approving the disability when so many people are turned away, actually makes it more real. Social Security believes it, so I must, too.

That reality is so scary. FTD is progressive and incurable. There are medications to address the symptoms, but there is no pill, no shot, no procedure that will stop the inevitable. I will get worse. I will need care. I will most likely die in the next ten years. I don’t fear death but I fear the life I will lead at the end. FTD has pronounced behavioral changes: inappropriate and aggressive behaviors. I’ve always prided myself on being a kind, loving person. That will likely go away.

I’ve begun giving up my ministries – everything that is important to me and defines me. I want to do it now while I can help with the transition and spend time with my wife while I still can. It breaks my heart. Ministries aren’t just things I do. It’s how I serve God, show love, and define myself. The behavior changes scare me the worst, so I’ve decided not to do children’s ministry. It would kill me if I lashed out at a child. It’s begun to happen already. There is no warning, no self talk. I simply cannot regulate my emotions anymore.

New symptoms show up as time passes. I’ve begun to experience apathy. My daughter came to visit me, and it would normally result in excitement and a countdown. This time I’m just numb. I’m glad to have her and her family with me but I’m muted. I’m also dealing with severe insomnia. Sometimes I’m unable to sleep at all. The exhaustion makes things harder.

I’m grieving the loss of my intelligence. I struggle with simple math or following the plot line of a book. I used to joke my favorite tv shows are new again but now I forget what’s happened in the last episode and frequently have to rewind and start from the beginning as I’m lost in what’s happening.

I will get through this; I always do. But I’m sad, angry and frustrated. This is my new reality and it will only get worse from here. I see the deterioration even when others don’t. I seek out answers but find none. I lament that those closest to me don’t understand what I’m going through. They don’t see the myriad of ways I’ve worsened over the last two years. I’ve been struggling since 2019 when I was diagnosed with Mild Cognitive Impairment. This isn’t new; It’s where I’m at. It’s why I grieve.