My kids have a dad in a nursing home who is sometimes embarrassingly filthy when they come to visit. Sometimes he is wearing clothes that do not belong to him. Sometimes he says f*** you to them but never if our granddaughter Charlotte is there.

This is not what the kids thought their lives would be like. Their dad should be giving them advice on their careers or on buying a house. Instead, he put them in debt like I am. He left them all reeling with emotions. They can’t help but be angry and scared.
thinking good things
It’s not pretty — this frontotemporal dementia (FTD). And it’s a big job gathering the courage to go see Barry each day. But my kids do it. My biggest fear was that we would all scatter to the four winds when Barry was diagnosed. (I even wanted to run away.) But no one ran away, and there was forgiveness along with much sadness for the loss of the father they used to have.Kelly visits a lot with her husband and Charlotte. Pat lives in New York but calls often and visits when he is in town. Mike goes to visit Barry most weeks as well. Mike also lived with Barry when he was first diagnosed. Mike had to grow up quickly. I am glad he moved out so he could do the things 25-year-olds do!

On Father’s Day this year, we went to the care center, bringing breakfast for Barry. The kids gave him cards and gift certificates to Dairy Queen. Pat called from New York. It’s not what any of us really wanted to be doing because Barry usually just gets up and walks away when we come. But on this day, he sat the whole time; and even with FTD hanging over us all, we had a few good laughs.

This is a tough time for my kids. But when we first learned of Barry’s FTD, I reminded them that as a family we have never had a really awful thing happen to us, and that now it’s our turn.

When I got home from the care center, I checked Facebook and saw that all three kids had posted a picture of Barry in better days and wished him a happy Father’s Day. I was so proud! My kids are awesome and a lot stronger now than they were before FTD came into our lives. We are going to make it!

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11 comments on “BARRY’S JOURNEY No. 21
  1. Beth-Ann says:

    Of course they are going to make it and their wonderful mother will make it too!

  2. Vito Galisto says:

    I’m reading your posts! You and your family are bravely facing a heart rending situation, Nancy! It weighs heavily on my heart and mind! I love how wonderfully you’re handling it! Say hi to Barry for me, love you guys!

  3. Not thinking it’s your turn, but it’s what is now, and you are putting one foot in front of the other.

  4. claudine coughlin says:

    Dear Nancy and your kids! I have been following all of your postings and I do know it is hard to see the changes that become of our loved ones and there is absolutely nothing we can do about it. It is best to talk with each other when you are not with Barry and try to be supportive of each others feelings. Sticking together will help all of you. I suggested a support group for you and your family, and I think this would be really helpful. You might want to give Moira Rummel a call. She has been very active in the Frontotemporal support group for many years. Her husband suffered for many years with it. Her phone number is 612-920-5502. Her family lived by Lake Harriet and I believe that all of her kids went to Southwest. She is a wealth of knowledge. I am praying for you and your family. Love, Claudine

  5. joe Nathan says:

    Your youngsters behavior is a great tribute to your parenting modeling & skills, as well as your courage.

  6. Linda says:

    Proud of you and your kids. You never know what’s coming around the corner in our lives. Thinking of you and yours,

  7. Shannon Samuels says:

    Aw, Nancy…brought tears to my eyes. Life can be so rough. Jon’s 49 year old son-in-law is lost at the bottom of Lake Berryessa for a week now, leaving behind a broken hearted wife and 2 teenage children (boating accident). We go on. God bless you and God bless your kids for doing what you can. LY

  8. Ann Hustad says:

    Such a sweet post Nancy! You have a wonderful family. And really difficult circumstances. Thanks for sharing your journey. You’re on my mind a lot! I think of those carefree softball days. You and Mary were crazy silly!!

  9. Beth Gibbs says:

    No matter how big or small life’s challenges are, when surrounded by love the journey can only bring you to a better place than where you were. Journeys don’t always takes us to where we were expecting or hoping, but all will be well for all of you. You have each other.

  10. Jeannie Porter says:

    Nancy, I look forward to your posts of ” Putting one foot in front of the other” and reading of Barry’s Journey for a couple of reasons. When living through a similar nightmare regarding my father, it was very hard to find humor in the moment and for some reason the “f” word suddenly became his sole vocabulary using it freely as almost any part of speech. Looking back through your journaling I can see more that I could have laughed at. Another thought I have is how fortunate Barry is to still have a wife and children interested in visiting since I was painfully aware of how many families just couldn’t. The decline, abusive language, institutional pitfalls, etc. were more than many could tolerate and with regular visits I became more aware of how many had few or no visitors. I really have only known you as an author through your children’s books and a glimpse of your art that always brings a smile to my face. Documenting your life changes with the onset of FTD has been sobering. It seemed a bit unfair to read your private life struggles and not respond. Thinking of you and your kids as you continue to show the love of a family woven together forever, even when times get rough. Jeannie Porter

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