BARRY’S JOURNEY – Half on and Half off….

Contemplating a memoir

Today I found Barry lying sideways, half on and half off his bed at the care center. He looked really uncomfortable, poor guy. To make matters worse, he was dressed in big, baggy old pants that I bought him when he weighed over 200 pounds. Now he weighs about 148 pounds. I didn’t notice that he wasn’t wearing a belt as I got him up for lunch. He shuffled into the dining room and his pants were down at his ankles by the time we arrived. This caused a bit of a stir among the ladies; some of the guys chuckled, too. It took the nurse and a couple of aides to get a belt on him so his pants would stay up. By the time we got to lunch, Barry was really stressed out. I was irritated with whomever dressed him — but I was mostly mad at the disease frontotemporal dementia (FTD).

As I fed him lunch, I thought about a memoir writing class I took last spring The Loft Literary Center in Minneapolis. Perhaps this blog, Putting One Foot In Front of the Other, could become a memoir someday. I learned a great deal from the excellent teacher. I was too shy in class, however, to ask the one question on my mind. I wanted to know if FTD could be a character in my story along with Barry and me. It seems like FTD is the evil protagonist in our story. Without FTD, we have no story.


A raging war

It’s almost like there is a war going on in Barry’s poor brain. Sometimes FTD takes possession of a part of his brain — like for the ability to swallow. Maybe FTD has a whole army that surrounds the swallowing part of his brain trying to take it over, but then Barry’s brain fights back and he is again able to swallow, at least temporarily! Then FTD sends out troops to take over speech, standing or walking. FTD messes with his mind all day, while Barry’s poor brain tries hard to hold its ground until it just can’t anymore and surrenders. FTD has won again. Each day the battle wages on and that damn FTD gains more and more control while Barry’s brain retreats. Someday there will be nothing left of his brain — just FTD enjoying the spoils of war. I really hate FTD.

In the memoir class, we had to write about a life-changing experience from another person’s point of view. I wrote about the day Barry lost control of his bowels because it was the day I knew his time at home was over forever. I tried hard to write it from Barry’s viewpoint, but I just couldn’t do it. I could not begin to imagine what he thought. So I imagined FTD as this evil guy taking over the part of Barry brain that says go to the bathroom. I imagined FTD getting a huge kick out of Barry’s humiliation that afternoon as he watched Ellen, his favorite television show.

While I was still at my studio working, the mess spread as Barry tried to figure out what to do. But, of course, FTD wouldn’t let him do anything but grab a beer and continue to watch Ellen with his pants full. FTD would get a huge kick out of me gagging and trying to wrestle Barry into the shower. Then FTD would laugh as I threw Barry’s new pair of pants into the garbage. How do I write a memoir with a character that I hate with a passion?

Back to lunch. Barry’s tablemate is a Russian woman who speaks no English. She said something to us in Russian, Barry stopped chewing, looked at her and repeated what she said in Russian. She smiled at him and I thought FTD, you are really messing with us today — first in bed, then the dropped pants and now this. When lunch was over, I brought Barry to his room and helped him lie down properly. I looked at the front of Barry’s head and imagined FTD trying to figure out its next evil move. Then, thankfully, Barry fell into a deep sleep. All was quiet — for the moment anyway.

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26 comments on “BARRY’S JOURNEY – Half on and Half off….
  1. Karen says:

    Bless you, dear Nancy and Barry.

  2. David Geister says:

    Whew . . . I am thinking of you two.

  3. Larry Satrom says:

    Nancy, I hope you understand, but I both love and hate your writings. I love it for the honesty and transparency, and hate that we have to be going through this, and the window you provide into my not too distant future.

  4. Kris Sandoz says:

    Dear Nancy, I have always enjoyed your books, as far back as I can remember. Please know that fans like me support you from afar with kind thoughts and prayers!!

  5. Ann hustad says:

    Wow so well written

  6. Sally I. says:

    Yes Nancy, this really should become a memoir. I think it would really, really help others who are facing FTD and other dementia-related diseases. Thank you for writing it out. Thinking of you.

  7. Jenny P. says:

    Nancy, your writing has given me hope and guidance as I travel through my son’s battle with cancer. We loved your books when they were little, and I find that you are again helping me process our journey as they are older. Please, please, please write that memoir.

  8. Debbie says:

    I think the illustration over Barry’s head is spot on!

  9. Kathy Klis says:

    Sending you hugs – big hugs!

  10. Nancy, I feel your distress. A year ago I found my husband in a care center in the “half on, half off situation. It is not what we want for our loved ones. I have received your doodles a day for a long time. Please keep inspiring people. we all love you.

  11. Julie Wicklund says:

    A memoir for sure with FTD as the evil villain for sure! Would be so helpful for others to know they are not alone on this journey. Thank you so much for your honesty Nancy.

  12. Kathleen Pondelli says:

    This latest post had me sobbing…remembering where we’re one year ago in this horrid disease…sending hugs…stay strong

  13. Bette says:

    Fucking Terrible Disease

  14. Maryanne says:

    You write from the gut and you help so many people. I’ve never met you but I sure understand your hatred of FTD. I like the idea of making FTD a character.

  15. Janice Little says:

    Your description of Barry is so similar to my sweet husband Marc. I always give family and friends your website address with the hope that it gives them insight into this hideous attack on our loved ones. While in my own head I’m screaming “LOOK! HELP! DOESN’T ANYONE SEE WHAT’S HAPPENING ?” your words and pictures depict this real journey with love, courage, and the humor that comes only from caring so deeply for each other. So yes, please keep writing this; it’s a lifeline for so many of us. Thanks Nancy…

  16. Deb says:

    Turning this blog into a memoir is an excellent idea, Nancy. I can see it helping so many people–including you! And building awareness–so people who haven’t personally experienced this can understand and be supportive–is always good.

  17. Jane says:

    my husband also has FTD. I do so appreciate your writings but am not looking forward to what’s in the future for either of us. Thank you!

  18. Nancy Jambor says:

    Bless you Nancy. You have a lot on your plate and so does Barry. I definitely think the disease can be a character in your memoir and I support you in writing it.

  19. Susan says:

    Nancy, Thanks you so much. You are helping me to see what my brother will be going through in the not too distant future. Susan Farnham

  20. Susan Backlund-Dixon says:

    Nancy, your ability to illustrate and write such heartfelt feelings touches a cord with so many of us – no matter what the circumstances are. A memoir of your blog would hopefully reach the many people that would find comfort in your words – knowing they are not alone in difficult circumstances.
    As a reader of your beautiful children’s books I thank you for letting us read your poignant words.
    Kind regards, Susan Backlund-Dixon

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