angels on head

Angels on head

How much does he know?

A few days ago, Barry was watching TV and looking really sad. He had been up a lot the night before, trying to shower and shave at 2:00 a.m. I asked him if he was tired. He said no, but he just felt that something was wrong and didn’t know what it was. He said, “I just don’t feel right.” I immediately asked, “You mean your dementia — is that what you feel is wrong?” He has never felt that there was anything wrong with him all this time, so I thought maybe now I could get a glimpse into his feelings. I asked again, “Barry, is it your dementia that is bothering you?” He said, “F you,” and returned his attention to the TV.

Shortly after this episode, he stopped making his sandwich for lunch or macaroni and cheese for dinner. He can’t do it anymore. I think for a brief moment he was aware he has dementia. However, that realization was quickly lost, along with the simple skill of making food for himself. Now if I don’t organize and layout his food for the day, he doesn’t eat anything except jellybeans — which is just another odd food addiction he has.

I guess it’s a good thing that he isn’t aware of the dementia because he will never know how much he has lost. I can carry that for the two of us.

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14 comments on “BARRY’S JOURNEY No. 6
  1. Mary Ann Peterson says:

    Dear Nancy,
    A friend recently told me, “You better check on our friend, Nancy Carlson, I hear she is having some difficulties”…Nancy do you remember when you came to NJ a few years ago to speak to Kindergarten teachers? We had such a nice visit with you. I picked you up and dropped you off at the airport. Well, know that today I “checked on you” by reading this blog. I am so sorry to hear of all that you and your family has been going through. Know that your K friends are thinking of you, sending you a hug and strength as you face this difficult journey. Friendship and prayers are with you! Mary Ann

  2. Vito Galisto says:

    Nancy, this is heartbreakingly sad. God bless you. The enormity of your situation and Barry’s is unimaginable to me. I wish there was something meaningful I could do or say. Please say hi to Barry for me!
    Love, V

  3. Nancy Glades says:

    Don’t have a website and don’t know you personally but you know my daughter, Molly Griffin. I’ve loved your books forever and now I’m reading your blog about your sad journey with Barry. I just lost my partner of many years to colon cancer a month ago. The part I wasn’t prepared for, at all, was his loss of self to dementia, hallucinations, delusions, agitation, etc… Who knew it could have that effect? There may have been brain involvement, or maybe it was just that his liver couldn’t clear toxins from his body – that’s what the hospice nurses said. Anyway, I can relate to the 2 a.m. need to take a bath or whatever, difficulty managing the simplest tasks in the kitchen, loss of so much…. heartbreaking. My prayers are with you as you take this journey with Barry. I hope you have a lot of support. It’s so hard, you can’t do it alone.

  4. Oh, Nancy, I am so sorry you have to carry that. It is almost too much to ask of anyone. Blessings to you.

  5. Laurie says:

    Nancy do you have the support you need. Take care. Let us know how we can help. Much love

  6. Dear Nancy,
    I keep you in my thoughts and prayers. I remember Paul losing so much of himself and the sorrow and the grief. I had to come to a whole different way of relating to life. And I did. But it was still sad. I wish no one ever had to live through such things. But know that people, even people who have never met you, care about you and are wishing you well as strongly as they can.

  7. Greg & Linda Vilmo says:

    Dear NoNo,
    These are such hard words of sadness. The cruelty of this disease is beyond reason. Even memories of happier times can feel like just a dream. Hoping the comfort of your loving family is carrying you through these troubling days. There’s never enough sweetness in this world.
    We love you!

  8. Linda & Greg Vilmo says:

    Dear NoNo,
    Such hard words of sadness. This disease is beyond cruel. Sometimes even the memories of happier times seem just like a dream. Hoping the comfort of your loving family carries you through these troubling days. There is never enough sweetness in this world.
    We love you!

  9. Gordon and Sara Jane minehart says:

    Thanks for sharing nancy. We appreciate your daily doodles, and we think about you and Barry often. Gordon and Sara Jane

  10. Jay says:

    I hope u know, Nancy, that I am here for u as well.

  11. Jim and Kay Griggs says:

    Our hearts break for you and Barry. We wish you didn’t have to be going through this but I hope you know that we are here for you. We love you lots!

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