Barry’s Journey -October 2016

Now 104 pounds

A few days ago I drove home from Grand Marais. It was past 8 p.m. when I rolled into town. I had this feeling that I should go see Barry so I drove to his care center. I grabbed a bottle of wine out of my car that had one serving of wine left in it. Once again I thought he was dead when I walked in. He was in his hospital gown, and it was pulled way up so you could see the diaper he wears. He now weighs just 104 pounds and the diaper is so big that it could be wrapped around him twice.
sleeping
His eyes were open. I looked at his chest as I always do now and I didn’t think it was moving. I thought to myself: this is the day Barry has gone to heaven. But as he always does when I pull up the chair to sit, he woke up very startled to see me. I pulled his gown down, unable to look at those skinny legs starting to kick again. I sat down, poured myself that small glass of wine, held his hand and tried hard to imagine what we might be doing if Barry didn’t have this horrible FTD.

I could not think about anything else except being stuck in this place and wanting to head back up north as fast I could. It is easier to imagine what could have been, what should have been when I am not at the care center. Barry fell back to sleep. I finished the wine and drove back to my apartment to unpack, wait and try to imagine what might have been — or what will be.

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12 comments on “Barry’s Journey -October 2016
  1. Beth-Ann Bloom says:

    Nancy, It will be peaceful for Barry when he finally slips away. He has lived through hell on earth and after that last breath there will be no more pain or confusion

  2. Keep looking forward. So dark now, but the light always returns.

  3. Christine bekiares says:

    We never expected to be held in limbo by life circumstances. My husband, too, is declining but ever so slowly. Some days I accept and deal cheerfully with the new normal. Other days, I feel so alone and empty… I have learned so much in seeing you find joy, and always compassion, not losing yourself in the struggle. Thank you so much for sharing your very private thoughts with us. Your messages have meant so much to many of us. Again, thank you…

  4. Chris Hanson says:

    Thinking of you and wishing you well. Chris

  5. Nancy Gjerde says:

    Oh Nancy. Your story is one that none of us could think of. You continue to be loyal and your commitment is remarkable. Sending love you to you and hoping you can find that moment that brings you peace.

  6. claudine coughlin says:

    Nancy, I am glad that you were able to get back to Grand Marias again. Sorry that you had to go through seeing Barry in that state. All of us are wishing you comfort and peace as you wait for him to be taken home. Love you, Claudine

  7. Coreen Blau says:

    Dear Nancy, I wouldn’t wish this on anyone. Barry no longer has the quality of life for living. He & you have been good & faithful servants of the Lord. I tended my Mother after her 4 strokes. Blessings to you dear one.

  8. Coreen Blau says:

    Dear Nancy, I wouldn’t wish this on anyone. Barry no longer has the quality of life for living. He & you have been good & faithful servants of the Lord. I tended my Mother after her 4 strokes. Blessings to you dear one.

  9. Maryanne Coronna says:

    Our friend, so bright, so ready to tell the next story. Barry. Our lives are better because he was with us.

    Nancy, you’re one of the most endearing (and enduring) women I’ve ever known.

  10. Lisa Ventura Olson says:

    I am so sorry Nancy! I think it is much harder on you than Barry…..I can only imagine Barry’s confusion but I can feel your pain in your words. I keep you & your family in my prayers.
    Love, Lisa

  11. Norman Draper says:

    Dear Nancy. You have our deepest sympathies for what you and Barry are going through. Please contact us if there is anything we can do to help. Norm and Jennifer Draper

  12. Jeanne says:

    You are such a great story teller. I could picture everything. Talent helps us get through the dark times.

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