At the end of a long day seeing clients I was writing reports. The language had to be very specific to meet Medicaid billing requirements but I couldn’t find the words. Believing I was simply tired I pushed thru for several weeks, but the vocabulary didn’t return. Getting reports done on time became a huge chore. To ease the burden I created a buzz word cheat sheet to get the job done, but it niggled at the back of my mind that I was struggling with terms I had been using since 1990.
That was six years ago and when we relocated to another city it was clear to me that my time in the substance use disorder field was over. Not willing to admit any deficit that information was something I kept to myself.
Public speaking and educational seminars had been a feature of my work during my career. I loved it and continued those type of engagements after my “Retirement”. As time went on I went from using a basic frameworks of topics to be covered to very detailed outlines of content. During my final speaking engagement I found myself getting lost in that plan, repeating myself and not feeling comfortable with the flow. Where once there was an ease to speaking in public, that had been replaced by nerves, disappointment with my “performance” and concern I wasn’t covering the topic adequately. Since a portion of those topics included my own story, I was concerned about getting lost in my own life. Again vocabulary I had used professionally was slipping further away. Not willing to admit any deficit that information was again something I kept to myself.
Several years passed as my short term memory became increasingly poor. Forgetting appointments, losing track of important documents, repeating questions, difficulty following recipes or multitasking in anyway, not remembering conversations within hours or days and even getting lost on the way home from frequented destinations. Not willing to admit any deficit that information I kept to myself, but people began to notice and were frustrated.
The struggle finally became too much at the end of 2017 and I had no choice but to come clean. Get lost in enough conversations, or forget enough of what is simply a part of everyday life and people will begins to worry. The stress of not admitting my difficulty also became increasingly oppressive. I felt like I was drowning.
Since opening up about my cognitive loss life has changed dramatically. After some adjustment the family has been hugely supportive by helping me create coping strategies, talk about my fears and determine the underlaying cause.
There have been a lot of visits to the neurologist, internist and neuropsychologist. Even though I was aware of a problem having the extent of my loss was a little tough to take. Knowing what I was capable of before, and where I am now, has been a grieving process. Being able to live with who I am today, rather than who I once was, has been one of the most difficult things I have faced in my lifetime. I’m still actively in that process.
It’s funny how life can take you by surprise. I think we all have a concept of who we are and how our life will continue to unfold. It’s a jolt to have that path disrupted or veer completely off course. I can choose to waste the time I have worrying about the progression of my cognitive loss or choose joy. I’m working on the joy thing.