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.
head in the clouds
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!

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19 comments on “HIKE FIFTY-ONE
  1. Karolyn Lee says:

    Wow! How very powerful this entry is. These entries you have written have been so powerful for me. I think of things I did not give my mom time to do. She was in early stages of dementia . I kick myself many times for not understanding! You have encouraged so many of us and I really thank you from the bottom of my heart! Keep hiking!

  2. Your journey is so much harder than mine was….Though Paul had no diagnosis until after death we understood what was happening….I had a power of attorney before anything bad could happen……….

    Peace be with you, Nancy…You are so brave and such an inspiration.

  3. Of course, I mean before anything bad financially could happen….Enough other terrible things happened….

  4. Beth-Ann Bloom says:

    At the end of the hike I hope you remembered that while the one day was difficult, you have treated Barry with incredible grace and love.

  5. Nancy Jambor says:

    You have so much courage Nancy. I can’t imagine what it must feel like to lose your best friend, partner, soulmate bit by bit. I so admire you and I know that your path is not an easy one. One foot in front of the other as you continue to hike or do the next right thing. I use both of these mantras on a regular basis. Thanks for sharing such a deeply personal post with us!

  6. Nancy Glades says:

    I’ve comforted myself with the mantra, you have to just do the best you can. I had some days of short temper and irritation; many days that living with a compromised loved one is just too hard. But, you just do the best you can. I told him that a few times too – and of course, he was just doing the best he could do, too. So hard. Blessings to you on your journey. Glad you can treat yourself with love and forgiveness.

  7. Rebecca Hsnson says:

    I really appreciate these sincerely, passionate and loving posts from your heart. My husband and I have been dealing with medical issues beyond our control. Your posts remind me to keep one foot in front of the other as life goes on. Thanks a million.

  8. Kitty says:

    What you do not say is that you did not know at that time that Barry had FTD. I know you were relieved when there was an answer for all of that behavior. You have been amazing and patient in your journey with Barry.

  9. Chris Hanson says:

    I think you’re amazing.

  10. Barbara Harrison says:

    Big hugs. It is such a hard journey.

  11. Lori Garin says:

    I just cannot imagine….. I think I would have kicked more than just a hole in the door.

  12. Diane says:

    Nancy you are such a strong and amazingly so talented. I love your books. I also enjoy reading them to my students. I also graduated from High School with Dave Geister. Good luck in your everyday life and thanks all the enjoyment we receive from you. I would love to meet you sometime. I need to come to one of your book signings, Godspeed Diane

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