BARRY’S JOURNEY No. 3

Time for a doctor’s visit

empty road

Empty road

Last week, Barry and I went to the neurological clinic to see his doctor. Barry has been super mad a lot of the time about money and not being able to drive! A couple weeks ago, he left a message on my phone saying, “I want to look into getting a car.” Then lots of swearing followed.

I have been worried recently about his medications. Because he has no health insurance, we haven’t been able to see the doctor as often as may be necessary to monitor whether or not the medications are still effective. We were due for a visit.

Upon entering the room, the doctor said, “How are you doing Barry?” Barry replied, “Well, I would like to drive. She (pointing at me) won’t let me!”Driving is the one thing he is still holding on to. He doesn’t seem bothered about watching TV all day or not seeing friends or eating anything other than waffles every morning. But he is still really, really anxious about losing his license.

Angry, but at whom?

His doctor tried to explain that Barry should be mad at the doctor himself, rather than at me, because it was the doctor who suggested that Barry take a driving test. Barry seemed to understand.

The doctor performed a few tests. In one interesting test, he grabbed Barry’s hands and said, “When I pull, do not resist. Just let your hands go limp.” The doctor pulled and pulled, but Barry could not let his hands go limp. The doctor asked, “Can you let your hands go limp?” Barry said, “No, no I can’t.”

I wondered what that test told the doctor, but didn’t want to ask in front of Barry. At the end of the visit, the doctor told me to start looking into memory care facilities. This made me feel giddy and sad at the same time.

The doctor prescribed a new medication that might help with Barry’s anger and eating issues. Then we were on our way. When I tried to pay, the gal in the business office said, “No charge!” We are on a long, sad journey, but there are moments of grace around every bend! For that I am thankful.

As we drove home, I asked Barry if he wanted to pick up a sub for lunch. He said, “Sure and I also want a car so I can drive!”

 

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15 comments on “BARRY’S JOURNEY No. 3
  1. Some roads are ending and others are opening. There will be another life for both of you, and memory care is an important key. Best, best wishes. We hold you in our hearts!

  2. Beth Psihos says:

    My mother held on to driving as well. She had dementia, and it caused her to not understand why we “wouldn’t let her” do things. Though wheelchair bound, she believed she could walk around and take care of herself, and most importantly, drive. She was furious with my brothers and sisters and I for not letting her go home when she was in a care facility. My heart goes out to you – so hard to be on the receiving end!

  3. Nancy, thank you for keeping us updated on what you and Barry are going through. I can’t even imagine the worry and the strain and the exasperation you have to be going through. It sounds like a memory care facility may be the blessing you are looking for.

  4. Leslie says:

    Nancy, I am a first grade teacher and have been a fan of yours for years! My students love your books and are always so eager to listen to your books 🙂 You are an amazing person and will be in my thoughts. Stay strong!

  5. Joe Nathan says:

    You have given so much to so many. Just purchased 3 of your books for some young children whose Mom in Oklahoma I work with – such wonderful books! Please let us know how we can support you – as your wonderful work has helped so many of us.

  6. Pat Bauer says:

    It boosted my faith in humanity to read that the clinic didn’t charge you. We think of you often and hope that you will reach out if there is anything we can do. I hope you find a place that will work well for both of you.

  7. Suzanne Moriarity says:

    Nancy and Barry — Our hearts go out to both of you. There isn’t a day when you’re not in our thoughts and prayers. It sounds like your doctor is wonderful and I’m touched by his generosity. Hopefully a good memory care center will be a possibility for a bit of peace. Thank you so much for taking the time to keep us all updated. Wishing you strength on this difficult journey.

  8. Jeanne Aurelius says:

    Nancy, I am so sorry you are all going through this. You and Barry and your family are in our thoughts and prayers.

  9. kris mccullough says:

    Nancy, I gave Moe the “It’s going to be Perfect” book this week at her baby shower that you gave me. I talked at the shower about that morning that we talked about our dreams for our kids and the reality

  10. kris mccullough says:

    Hi Nancy- I don’t know if my first post went through..:) this week I gave Moe my copy of “Its going to be perfect” at her baby shower, and I spoke of sitting around that morning talking about how our dreams for our children did not always match the reality of parenting.
    Maybe you can do an adult version… I know the reality of marriage/ growing up/ work etc is not the same as future I planned- most things wonderful, some not so great.
    Kris mccullough
    PS- Moe had her baby the next morning and he is beautiful!

    • OH my gosh how wonderful! I will always remember that morning we were all talking and I got the idea for that book!
      So happy you are a grandma too. Isn’t it great!
      Thanks for the email!
      NC

  11. gwen hauser says:

    I was in Barry’s class at Washburn. I had no idea he had FL dementia. My husband has Parkinson’s, and dementia is commonly part of the progression of PD. The ups and downs are exhausting. A friend of mine said it is best if people ask you how you are doing today and not just “how are you doing” That has been helpful. It divides what is happening into smaller pieces.

  12. Dear Nancy, you are so much in my thoughts and prayers. And you bring back many memories. You have a wonderful doctor! Very close to the end of Paul’s life (he died after a horrible accident in a nursing home he was in for rehab) he said to me, “Don’t fret. Remember nothing lasts forever.” I just could not ask him what he meant. My heart was breaking. It’s a very bitter sort of consolation, but it is true. Nothing lasts forever. Do you have a social worker who can help you look into those memory care facilities? Perhaps the doctor’s office can suggest someone.

  13. Melanie MacLean says:

    Nancy, you have faced a very difficult time in your life with grace, courage and strength. The thing that I am most impressed with is that you have kept your sense of humor, i’m sure that has helped out in many many sad and/or stressful moments. You Rock Sista!! Melanie

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