My husband Barry has been at his care center for just over a year now — but it seems like forever. It’s still hard to believe that he is there for the rest of his life.

I feel stuck in someone else’s life when I drive there each day, climb the stairs to the second floor and see him lying in his bed. Barry lies there, moving his legs back and forth all day long. He is unable to get out of bed so I think the leg motion is his starting attempt to get up. But frontotemporal dementia (FTD) is so cruel that it lets him begin to get up and then takes away that ability over and over again all day and night long. As I have said before, his stomach muscles are as hard as a rock from this repeated motion.

Since the day Barry arrived at the care center, everyone there has called him John. I don’t blame them because his given name is John Barry McCool. His father’s name was John so since birth he has been called Barry, his mother’s maiden name. Barry always dreamed of going to Ireland to find the town or area called Barry where his family is from. But we just never found the time or money for the trip.

It was his Irish looks that caught my eye when we first met at the YMCA. I was taken with his dark hair that looked a bit red at times and his deep blue eyes. He was proud of being Irish as were his Dad and favorite Uncle Howard. At most events with his family, the Irish blessing was recited several times along with many Irish toasts. He has a book of Irish toasts in his room now. I should get it out and read a few toasts aloud on my next visit.
When he first arrived at the care center, I told everyone to call him Barry so he wouldn’t be confused. It was also important for the nurses to know whom I was talking about when I called.  To this day, he is still called John by everyone there — even by me now! He seems to respond to John more than Barry. Has he forgotten that his name was Barry? All his old friends called him “Bucks.” Does he remember that? I always called him just “Bare.”  Very rarely did I call him Barry, unless I was irritated with him about something and then it was BARRY!

I sat by his bed the other day trying to remember what he called me before he got FTD. Was it Nan, Nancy, Nanc or just honey? It has been three years since we have had any real conversation. I actually have no memory of what he used to call me. Now on a rare day when he actually speaks, he calls me What else will I forget about our life together as we both wait to see what happens next.

It makes sense that I also call him John at the care center these days because there is not much left of the old Barry. FTD has taken it all, except for those beautiful blue eyes. Each visit, Isearch those eyes for any sign of the old Barry, but, sadly, I only see a guy named John. Damn FTD!

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15 comments on “BARRY’S JOURNEY – John
  1. Christine bekiares says:

    Thank you for sharing. Your words give us insight to the plight of those trapped by their loss of ability, whether mental or physical. I also marvel at the grace you show in your days of sadness. Who ever enen considered the possibility…

  2. Patricia Schenk says:

    Dear Nancy,

    It is heartbreaking to read your journey. This is such a cruel disease and hits every patient differently. I have never met you; but knew of you as an author from the beginning of your career. It is such a joy to me to see your pictures on my Facebook page every day. Thank you.

    I just want you to know how much your writing has meant to me. Also, to let you know you are in my prayers. My mother has a form of this; but we are fortunate she is able to live each day comfortably and “in the moment”.

  3. Mary O'Brien says:

    You write so beautifully. Every one of your posts is a tribute to the power of love. You are always in my heart and prayers.

  4. Sally says:

    FTD stinks. I thank you for sharing these tough emotions with us. You have a wonderful way of sharing this painful chapter in your life.

  5. Nancy~~You are so very, very strong and special. I talk about you with my husband (whom you might have met for a second), your hiking trips and the extreme difficulty you have in seeing your husband because both he and you have lost so much. I really admire you and your persistence amid so much suffering. If there is anything, anything I can do, please contact me through my email, I am a really good listener, and also someone who is a good talker if needed. Please, please do not hesitate!! BTW, I am also an artist of sorts~~don’t know if I told you that in the brief few minutes we spoke. Peace and Tranquility, RacheL MilsteN =^&^=.

  6. Holding you in my heart.

  7. Tim Moodie says: – now you really got me, I’m Irish.

  8. claudine coughlin says:

    Hi Nancy, Might I suggest some Irish music playing when you read the toasts! Maybe you could sign a little ditty too. See if you get any reaction. Don’t expect one – but wouldn’t it be fun if you did. I love reading everything you right and I am keeping you in my prayers! Fondly, Claudine

  9. Theodore Olson says:

    Every time I see your blog, I’m just ground and wrenched at the contrast between the Nancy you are to us and our kids, and the Nancy you might be to yourself with your “Bare.” It just tears at me. Maybe because I’m old enough at 56 to have finally laid all my parents’ generation to rest, and a brother, this just leaves my kid mind wondering where time went. Especially when looking in the mirror! Jikes! Anyway, Love that last name, McCool, and I’m coming from an Irish clan, so it calls to mind many things. Thanks for writing it out.


  10. Jim Burns says:

    We’re with you in spirit climbing those stairs everyday-please know that your courage inspires us to be better persons and cherish each day.

  11. Talla Skogmo says:

    Oh hell just grab the Irish whiskey!

  12. Sending prayers…….But you are very strong and doing better than you might realize……

  13. Sue Kruskopf says:

    Nancy–I had no idea till someone shared this! I so admire your honesty and candor….

  14. Rocky Marceau says:

    Hi Nancy!
    Stay strong! My thoughts and prayers are with you. I remember the old Barry, too. All though as I get older my memories get fuzzy as well. But I do remember him all bundled up In his ski clothes always helping out at the ski races.
    You must miss him terribly! I remember him as always being such a fun happy guy. And so good with the kids! Thank you for your writings. It’s a great insight into FTD.

  15. penny main says:

    My husband has ftd. Diagnosed in 2010. Had it for several years before that, I’m sure. I just read your comment that says it was in new yorker mag. I could have written that. He went into home Feb 23,2015. I am not rejoicing abt the holidays ahead. Would like to lay on his bed all those days with him.he hadn’t spoken for 3 years. Oh to have a conversation with him.

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