BARRY’S JOURNEY No. 27

It has been a while since my last post, and I am sorry to have kept everyone hanging. It seems I no longer have a firm hold on time while I juggle so many projects that I never get anything done. You would think that now entering my third year of trying to manage my own affairs that things would have become easier – but they are not easier. My mind keeps traveling backward instead of forward. I wonder what that means.

At the time of my last post, I was heading into bankruptcy court. I can report that it was not fun. I just hope I did the right thing. Second guessing myself is what I do a lot of these days. My case is still being worked out so I try to avoid thinking about it by moving from one project to the next. As I have said before, numbers are not my thing — but they are clearly important to the lawyer for the trustee! He caught some mistakes I made in reporting my income. Wow, that was scary!

After my day in court, I babysat my granddaughters, and that gave me the peace I couldn’t find on my own!

In my last post, I wrote that Barry was accepted into hospice. At the time, I really felt that his life would end soon. He wasn’t eating, and if he did eat, he kept the food in his cheeks. He was thin and falling a lot. I even asked his old friend Joe if he would read the Irish Blessing at Barry’s funeral. I wondered what Barry’s death would be like.

But now a couple of months later, I can report that Barry is doing much better. First, he is being seen by more people. A hospice nurse comes each week to shower him and check for bed sores and any other problems. Barry enjoys regular visits from a chaplain, and a social worker checks in. In addition, a wonderful volunteer comes each week. This is a relief because my busiest months are coming up in February and March so I can’t be there for Barry every day.

Off the strong stuff

The big change is that he is now off most of his heavy-duty medications. He used to be on a powerful drug called thorazine that was so strong he could barely talk. I also believe it affected his ability to swallow. He was a zombie on that stuff — but a quiet zombie! Now he is on one lighter antipsychotic drug only as needed.

I feel now that I am seeing the true picture of his frontal temporal dementia (FTD). Barry can sometimes interact with me, he laughs more and eats just fine. He still constantly moves his legs up and down. But every once in a while, he just sits in the chair not moving at all, except for a hand tremor that started this past year.

He still can’t do anything for himself. For instance, if he is lying in bed, he can’t figure out how to get out. This is worrisome because if I am not around to get him up, he could lie there most of the day. But now he has the hospice people checking on him, too.  When Barry is up, he walks around just fine without falling. His FTD makes him repeat everything he reads on signs or hears, and he talks extremely loudly, which can irritate the other patients. This week when we walked the hallways, he repeated the words on some sign in the hall over and over again. It was getting irritating so I said, “Barry, life is fun.” Then he began to repeat “Life is fun” over and
over until some guy stuck his head out of his room and said, “Life is fucked.” Then Barry started saying, “Life is fucked, Life is fucked,” which ladies on the floor did not appreciate. So I said, “Nancy is hot.” He repeated ”Nancy is hot” for the next ten minutes. I liked that!

two many wordsMore awareness of his situation

Things have stabilized for Barry; however, I am concerned that he is more aware now of his situation. In fact a few times during recent visits, his eyes have filled with tears. Barry has had no emotions for at least four years now, so this development really bothers me. I don’t want him to sit there every day being aware of what he has and what he has lost. Last week as I was leaving, he looked like he was about to cry. I said, “Barry are you sad?” He just looked at me and tried to say something. But it came out not making any sense. I wonder what is going on in his head. If drugs take away awareness of his dementia, then I vote for giving him the drugs. On the other hand, I would miss those very few moments when he can actually tell me something important.

For now, we continue as we are — walking the hallways with Barry hopefully saying, “Nancy is hot!!”

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12 comments on “BARRY’S JOURNEY No. 27
  1. Nancy, I wonder what art therapy or music therapy might do for Barry? Would you consider taking along some crayons and paper next time you go to visit? I understand that many people can sing when it’s hard to express themselves in other ways. It’s clear how much drawing helps you express deep, deep feelings.

    Thinking of you! Jane

  2. Sandy Boren-Barrett says:

    Nancy,
    i keep praying for you ! Thanks for sharing your journey…we can all learn so much from you !

  3. I am praying for you, too…..These latest writing bring back such sad memories for me. You are so brave, Nancy, and so tough.

  4. Linda Frankenstein says:

    Nancy,
    Even people that you don’t know are out there pulling for you, sending you their good wishes and prayers.

  5. Maryanne says:

    He is still amazing to me. And you are even more amazing. We love you.

  6. Ellie Lucas says:

    You have a gift. I admire your strength, your creative problem-solving, and your ability to be playful when this complicated journey has to be one of the toughest to navigate. Big Hug

  7. claudine coughlin says:

    Hi Nancy, I was with your mom at PEO on Friday. We had a nice visit about all of your art work. I love the painting you have been doing in Stillwater. Good luck with helping Barry with his talking. Does he enjoy music? This could be something he could listen to when you are not with him. Try to choose music that he use to like “back in the day”. This seems to soothing to a lot of patients. I am keeping you in my prayers. Love, Claudine

  8. Laurie Ryan says:

    Sending love, Nancy! I don’t know anyone hotter than you right now.

  9. Beth Birke says:

    You are extraordinary beyond belief. Beth.

  10. Dwight says:

    MY prayers are with you, sounds like you have a very strong support group.Keep moving forward!

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