Superior Trail and the unfortunate email
As I hiked in June along a portion of the Superior Trail that I had not hiked before, I kept thinking about a specific day in this journey with Barry’s frontotemporal dementia (FTD). It was about one of the worst days Barry must have gone through. That day, I received an email, representing three families that Barry had borrowed money from. They were all together talking, perhaps over dinner, and discovered that Barry owed them all money. They also discovered that he had not paid anyone back and would not answer their calls.
I have thought a lot about that day. The email came during a very hard time for us on all fronts! Barry and I were caretakers for an apartment complex, which meant that we were on call all the time, spending our days cleaning the town homes. I was constantly irritated as I realized that Barry was of little help with our care taking duties and that he did not seem to care. When we cleaned, I would occasionally send him back to our place for rags or other supplies. He rarely came back with what I needed. Sometimes I would find him just eating and watching TV. One time I sent him for cleaning supplies and he came back with room deodorizer! I was mad, confused and angry every single day during that time.
Barry, on the other hand, didn’t seem to have any emotions about our situation. As I read that group email at my desk, my heart started pounding — a sensation I soon discovered would become a part of my everyday life. I yelled for Barry to come up to my small studio, which in those days was also where I slept on the floor. I was so mad at him that a hard floor seemed better than sharing a warm soft bed with him in it! At that time, Barry also wandered around at night, sleepless from what I thought was worry over our financial situation. But now I know the sleeplessness was just FTD causing trouble with Barry’s sleep pattern.
Emotions are the first to go
I showed him the email and screamed at him. But instead of looking him in the eye, I watched his hand grip and ungrip the arm of my chair as he read the email. Whenever I remember that day, I can’t stop thinking about his gripping and ungripping that chair. I was fascinated by his response. After reading the email, he simply stood up without a word and went into the bedroom. That’s the day I was so incredibly mad that I kicked a hole in the bedroom door. But now I know that emotions, guilt, sadness, love, tenderness and worry are the first things to go with FTD.
This is the bad memory that popped into my head as I hiked the Superior Trail from the Kandance River. I now realized that watching Barry reading that email and gripping the chair was the last glimpse I would have of any true emotion from Barry. It breaks my heart that the emotion was most likely fear! Odd what you think about when you hike alone. I feel bad now that I was so mad at him, but I am learning to take each step with forgiveness and understanding.
So I keep hiking!