Lost

I was diagnosed with schizoaffective disorder in my 20’s, but we struggled to get it under control. I would be okay for a while and then would fall apart – losing my job, suicidal, and locked in psychosis. Out of desperation, my psychiatrist and I decided electroconvulsive therapy (ECT) was the best option and last resort. For six months, 2-3 times per week, I had the procedure done in the hospital. (12 weeks is the standard treatment.)

ECT did a number on my memory. 2017 disappeared as did many other memories. I forgot where the glasses were. I forgot how to enter my phone number at Fred Meyer. On the upside, I forgot arguments and slights. I stopped being so angry and bitter. I began to build a life on helping people instead of resenting them.

 In 2019, I was diagnosed with Mild Cognitive Disorder (MCI). I was supposed to go back in a year for repeat testing, but I plateaued and didn’t think it was necessary. Life continued to get better as ministry opportunities took the place of missed opportunities. I was stable and happy.

About a year ago, that changed. The memory issues became more pronounced. Senior Moments became the norm. I knew I’d gotten worse, but I didn’t think it was all that bad. I went in to get reassessed – a four-hour assessment testing my cognitive abilities. The results weren’t good. I had progressed from MCI to Major Neurocognitive Disorder – frequently an umbrella term for dementia. I had “significantly” worsened. It wasn’t clear what type of dementia it was, but it indicated Frontotemporal Degeneration. I went back to the neurologist I had seen in 2019 rather than the neurologist who ordered the second assessment, but she dismissed me. I went back to the second neurologist who couldn’t offer answers but referred me to the Swedish Women’s Brain Health program and ordered a PET scan. The scan showed what the assessment showed: Frontotemporal Degeneration.

Unfortunately, the symptoms that had driven me to get help – the memory loss, falls, difficulty swallowing and resting tremor – didn’t line up with Frontotemporal Dementia and even if they did, there was no treatment available. I made the appointment to go to Swedish in November but the first new patient appointment was in September. (I’ve since learned they’re now closed to new patients.)

I continue to worsen. A friend, whose mother had Alzheimer’s, described the decline as a stair step rather than a gradual change. That’s where I am. I go along okay and then a drop comes. I get used to my current ability but then another drop happens, and I start all over. I gave up my license as I couldn’t focus or multi-task (watching for speed, pedestrians, signage etc.). I had to take away my mother and father’s licenses and I told my kids I refused to do that to them. So, when it became clear that I was unsafe on the road, I gave it up.

I try to find words to describe what I’m going through. Memories just disappear into a black hole but the really scary part is I misremember. I can no longer trust my memory. I used to be known for my memory and intelligence, but both are fading. I’m grieving my diagnosis. I’m scared about my future. I can tell I’m getting worse. Both my wife and best friend see the decline even when others don’t. My friends don’t know how to help so they try to tell me it’s not that bad. But it is. Denial doesn’t help me. I will get through this as I always do but it’s not easy.

I’m angry. Angry that even if I’m alive as my grandson grows up, there’s no guarantee that I’ll remember who he is. I am angry that my schooling and training aren’t going to survive this. I can’t hold down a job. I can’t learn new things or memorize anything. I have tricks I’ve learned. I keep a detailed planner and color code my appointments. I use audio reminders because in the time it takes me to write things down, I frequently forget what I wanted to remember. I’m angry I’ve lost the independence to drive. I have friends that offer to help but it’s frustrating to not be able to just go where I want to.

The doctors tell me there’s no treatment. I hope they’re wrong. I look forward to my September appointment hoping they will find something to be done. In the meantime, I wait. Wait to see what my next assessment shows. Wait to see if the doctors at Swedish can help. Wait to get worse. Is that pessimism or realism? I’m not sure anymore.

Photo by Daniel Jensen on Unsplash