OUR JOURNEY

A good night’s rest?

Through this journey with Barry suffering from frontotemporal dementia (FTD) and our money worries, people ask me if I have a hard time sleeping. Actually, there have been very few nights since our troubles began when I have not slept like a baby.

I am blessed with the ability to sleep. One of the few nights when I could not sleep was when Barry was fired on Dec. 23 from the caretaker’s job. He had just been diagnosed with FTD, but no one at his job knew about it. The manager told us we had to move out within 24 hours. That night, I laid awake staring at the ceiling, barely able to breathe in the guest bedroom of my parents’ house. I felt buried alive that night as I tried to figure out what to do. The manager ended up letting Barry stay on after I begged and showed him the paperwork from the neurologist about the diagnosis. Soon after that, I moved back in with Barry because he could no longer live on his own.
teeth
Though those years, I slept on the floor of my studio and on many couches. I was so angry at Barry that I could not sleep in the same bed with him. But not even the anger could keep me from a sound sleep. I thought I was sleeping so peacefully, but the stress I was feeling came out in the form of grinding my teeth all night long. I found out that I was grinding my teeth from my dentist. I had no idea. My teeth had been aching for many years and now I knew why.

Teeth tell the story

I have been thinking about teeth a lot lately — not just mine, but Barry’s as well. I am worried about his teeth. When feeding him lately, I have noticed that his bottom teeth are very crooked. I do not remember his teeth being crooked. Did I never see his bottom teeth before? You would think I would know how they looked given our decades as a married couple. Were his teeth always that crooked or have they been shifting? Are they loose? I tried to reach into his mouth the other day to see if they were loose, but he wouldn’t let me — and I didn’t want to lose a finger. Maybe he is grinding his teeth because of stress, too. Maybe they are loose because the aides don’t brush them on a regular basis. Barry holds spit in his mouth for hours and that can’t be good. Or maybe all these years, I simply never noticed that his bottom teeth were crooked.  What else have I never noticed about him and most likely never will now?

My dentist gave me a mouth guard to prevent teeth grinding. I am surprised at how comfortable it is, and my teeth aren’t as achy!  Barry does not have that option. He can’t safely wear a mouth guard, and he can’t sit in a dentist’s chair without being sedated. They can barely brush his teeth because of his constant movement. If his teeth are loose, there is likely nothing to be done about it. Barry is slowly losing the ability to swallow, and I hate to say this, but soon he won’t need teeth.

I may not remember what his bottom teeth looked like, but I do remember this handsome man’s beautiful smile. That’s the memory I will keep.

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9 comments on “OUR JOURNEY
  1. Christine bekiares says:

    Thank you for your comments and understanding. It has helped me! My very best for a blessed Christmas with family!

  2. Karen Bauer says:

    Nancy, your descriptions are just heartbreaking. I’d be grinding too, but it’s good you sleep. Best wishes to you.

  3. Joyce from Vermont says:

    For many years, I have been following your doodles, picture books, and now your blog. Thank you for share your journey. Your insights, humor, and courage to share the details bring your struggle close to my heart and mind. You’re amazing and I pray to feel love, hope, and strength as you put one foot in front of the other.

  4. Joyce from Vermont says:

    For many years, I have been following your doodles, picture books, and now your blog. Thank you for share your journey. Your insights, humor, and courage to share the details bring your struggle close to my heart and mind. You’re amazing and I pray you feel love, hope, and strength as you put one foot in front of the other.

    Sending my support!

  5. Keep that smile in your heart,

  6. Audie Gillespie says:

    Dear Nancy – I’ve posted comments about your writing before, but I’m not sure that they went through. Your honesty and unflinching descriptions of the journey you are on with Barry are as moving and vivid as anything I have ever read. I am another of your friends and admirers who stands in awe of your ability to describe and process all that you are experiencing. This is a tremendous service and true inspiration to anyone who is going through tough times. Thank you so much for sharing all of this journey with the world. God bless you and our family. Audie G.

  7. Audie Gillespie says:

    Dear Nancy – I’ve posted comments about your writing before, but I’m not sure that they went through. Your honesty and unflinching descriptions of the journey you are on with Barry are as moving and vivid as anything I have ever read. I am another of your friends and admirers who stands in awe of your ability to describe and process all that you are experiencing. This is a tremendous service and true inspiration to anyone who is going through tough times. Thank you so much for sharing all of this journey with the world. God bless you and your family. Audie G.

  8. claudine coughlin says:

    I am keeping you in my thoughts and prayers. There are so many
    things to be concerned about our loved one as their conditions get worse. I hope that you may have a blessed Christmas with
    your family. Six years ago on Christmas Eve I took two of my granddaughters to visit Tom. I had put sticky bows on his packages and as he opened them Alison and Emily each took a bow and put them on their heads. Tom did the same thing and I took their picture. He had a big smile and was so happy to see the girls. The next day he had to go to the hospital and he died on Jan 4th. That Christmas Eve was so special and both the girls remember how silly he was that day. Cherish all those special times because they always will help in years to come. Love, Claudine

  9. Nancy Paxson says:

    Thanks so much for sharing this story. I am so touched. You are a treasure!

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