BARRY’S JOURNEY No. 16

More moves for Barry
clouds
In my last post, I reported that Barry had been moved back and forth to hospitals and care facilities that didn’t want to or couldn’t take care of him. The saga included a two-week stay at Unity Hospital geriatric psychiatry unit where they amended his medications so Barry would be less agitated. But he lasted only an hour-and-a-half when sent back to his care center until he was once again transferred to Methodist Hospital, which already said they did not take dementia patients. That same day, he was then transferred back to Unity Hospital. More money was being spent on needless moves back and forth.

Dealing with over-stimulation

After a few more days, Unity Hospital sent him back to his care center. He is really drugged-up and spends half his day asleep, but he is not swearing and pacing as much. I have to say that his care center now has worked really hard to figure out the best room for Barry. We all decided the Alzheimer unit was not a good place for him. It is too loud and there are too many people milling about. The staff and I noticed that Barry starts swearing and getting upset when there is too much going on. Even having a roommate didn’t work out. The wonderful social worker at the care center found a loophole in his medical assistance coverage that says if bad behavior results from having a roommate, the plan will pay for a private room.

Because Barry had been pushing a button to open a door and escape the unit, the staff taped a box over the button. All he needs to do is reach under the box to push the button, but Barry can’t figure it out, so he is now confined to this unit. I got his TV working and all his skinny clothes hung in the closet of his new room. (He has lost a lot of weight.) For now, we are in a holding pattern. I can’t help worrying about what’s next. I do know the care center is working with Barry and me to keep him comfortable and more relaxed. Although he is pretty drugged-up to calm his agitation, a few days ago he looked up at me from his chair and said, “You are trying hard to take care of me aren’t you?” I said, “Yes I am!”

This very simple conversation meant the world to me!

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23 comments on “BARRY’S JOURNEY No. 16
  1. joe Nathan says:

    You have such courage and are displaying such a huge amount of love. You are an inspiration.

  2. Beth-Ann says:

    Glad to hear that Barry is at peace for the moment. Should he need to be hospitalized again there are also locked geriatric psych units located at United, Regina in Hastings, Ridgeview in Waconia, and the U. Wishing you both a period of calm and healing.

  3. Luanne Lescarbeau says:

    You have always been a master of the written and the spoken word. Now as you walk through this stressful time of your life, I am so happy that Barry’s words can still bring you comfort. Words are powerful!

  4. Jean Spielman Housh says:

    You are working hard to take extra special care of Barry. And he knows it and loves you for it. Hang in there. I am praying that you two can have peace.

  5. Nancy Glades says:

    Nancy, I found this book extremely helpful: The Spiritual Journey of Love, Loss and Renewal, by Beth Witrogen McLeod. It’s such a hard journey you’re on. You write beautifully about it, but it’s just such an exhausting and wrenching thing to do!

  6. Ann Hustad says:

    Wow you’re amazing Nancy! I would LOVE to walk with you! Out of town this weekend and will connect soon! Hang in there honey! My thoughts are with you!

  7. I’m so grateful you are sharing this journey on your blog. None of us know if someday we may be facing a similar situation and it is a kindness for you to let us know the ups and downs and how you are dealing with everything. Wishing you and Barry the very best. If you ever have a free moment I’d love to treat you to lunch sometime.

  8. Pat Bauer says:

    How wonderful that Barry had a moment to acknowledge you and all that you’re doing for him. He certainly had no idea that the “in sickness and in health” part of your wedding vows would have the meaning that it does . . . nor did you, I’m sure. You are a true hero!

  9. Amy says:

    I’m sorry, Nancy. There are several people who live with my mom who are intent to “escape”. It’s very hard for everyone involved – you, Barry, the other residents and the staff. Hoping you find the right balance of drugs, peace and place.

  10. Nancy, you are a ray of hope and light to Barry. It may be hard to see most days but he knows and can feel your love.

  11. Cathy Clark says:

    You are so brave and doing everything you can. Your post made me cry tonight, because I remembered something very similar with my dad. He would seem to be not paying attention, struggling to communicate for hours, then say something like, “what do you say we get out of here?” And the person you know is there. Still there. Thanks for writing about it. I’m following your journey.

  12. Patsy Shaughnessy says:

    I hope you know you are Barry’s hero and mine too! The circumstances were different, but I also have been on a journey similar to the one you are on now. I cared for both of my brothers and can understand your frustration with the health care system. I also understand what it feels like to wish for one day to go by without a new crisis. Every day I would hope I could be proactive instead of reactive. What a victory to have Barry acknowlege all of your care and hard work! He is fortunate to have you fighting for him. Your bravery is superhuman! I’m happy you’re finding some time to do things for yourself. Keep hiking and swinging that golf club and if there is anything I can do to help, please call on me.

    • Thank you Patsy. Maybe this summer we can do a happy hour golf. You have a lot in your life as well. We can hack away at the ball and grab a beer!
      I am home the rest of the summer after June 26th!
      Take care! NC

  13. Although it brings back a lot of sad memories, I am glad to read your blog, Nancy, because you show such love and grace in these terrible circumstances. You are an inspiration. I’m glad things are in a better place at the moment.

  14. caroline gibbs says:

    It is a great reminder to all of us that the simplest acknowledgement of our efforts are all we need to feel validated/valued. I’m sure his heart would say a lot more to you if his head would let him!!

  15. Jim and Kay Griggs says:

    We love you more than we could possibly say. You are such an inspiration to the whole family.

  16. Mary Swank says:

    I’ve been so worried for you Nancy. Thank you, thank you for this slightly better update!

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