Barry’s Journey

September 2016

Resuming my daily care center visits with Barry is harder than I thought it would be. I live in a state of denial while I am up north. I think about Barry all the time while I’m away, but then I head off on a hike and lose myself for a few hours looking for neat stuff growing out of the forest floor. But when I return and look into the face of FTD every day, I have a hard time doing anything productive after sitting with Barry for an hour or two. I feel so bad for him and at the same time lonely for the north woods.

Barry now weighs 109 pounds but still moves a lot in his bed. He holds his feet a few inches up and kicks them back and forth. I try to hold his hand, but after a bit, he reaches for something near his head and I don’t understand what he is trying to do. He looks like a very sick old man. One day his entire floor of patients seemed a bit off. One guy down the hall was swearing loudly and an old lady was asking for help and her mother. (Poor thing.) I blame it on the full moon.

I received a message from Barry’s hospice nurse a few days ago telling me she noticed that Barry stops breathing while asleep. She figures maybe he always had sleep apnea; and she is right. For years and years Barry snored loudly and would gasp for air countless times during the night. I complained and begged and pleaded for him to have a sleep test done but he stubbornly refused to admit he had a problem. So I continued to kick and nudge him all night long and listen for that snort that meant he was breathing again. I did that until I moved into an empty bedroom in our house when FTD was starting to take over his frontal lobe. He is too far gone now for me to say, “See, I told you so!” Dang it.

I went to his room the other day and he was asleep so I quietly watched him for a long time. His mouth had that sucked-in look of no teeth, although he has teeth. It is just that he is so thin. I watched as his chest stopped moving, then a few seconds later he gasped for air. Then again no breathing and a gasp. As I sat there, I thought maybe today is the day he will stop gasping for air and that beautiful full moon will guide him up to heaven.
snoring
But then as Barry stopped breathing once again, the swearing guy down the hall shouted “Fuck You” really loud. Barry gasped for air and was startled awake. He looked over at me and then started kicking his legs and moving his arms — as a guy with FTD does.

It was then that I decided to look into having him moved into a quieter area of the care center so someone shouting doesn’t wake him up the next time he stops breathing.

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21 comments on “Barry’s Journey
  1. Mary Wesenberg says:

    Your so strong Nancy! I think of you often, sending hugs & prayers for you and your family.

  2. Karen J. Carlson says:

    How heartfelt. How sad. Blessings to you, Barry and family. Prayers for a peaceful ending soon for Barry and then for peace and eventual joy for you.

  3. Nancy Paxson says:

    You are a blessing.!

  4. Kathy Klis says:

    Holding you close in a hug.

  5. Shannon Samuels says:

    I’m going to be honest here and tell you how sad this post made me feel. I like to think my Jon and I have many good years left, and that when the end nears for us it will be fairly easy, at home, and relatively painless. Would that we could all go to sleep when we are ready to go, and then just not wake up that one last time.
    It doesn’t work that way for most of us, though, does it? Why are some of us forced to live on when our time really has long since passed?
    I know your heart and soul are despaired of all this, Nancy. And I’m sure your husband is ready for his next journey. I will pray for his release from his earthly vessel, too. My heart is with you.

  6. Wishing for peace for you all. Whatever that will mean.

  7. Maryanne Coronna says:

    Beautifully written, Nancy.

  8. Karolyn Lee says:

    I know you may not feel it but you are one very strong lady.

    • Mary Beckman Woodward, says:

      The slow goodbye is torture on the family. In my case I don’t go very often anymore. The spiritual wordless connection floated off several years ago. And the utter irony with my lupus and kidney failure I’m now sicker ,like many caregivers. My doctor has now forbidden me to go except monthly with a surgical mask on ( lots of contagious diseases at the nursing home). Decide what is healthy for you Nancy but please don’t let yourself get sick or worn down. I too am free up north and in our cabin I have the Harry I once loved- the music , the books that were written up
      There, the beauty and the freedom. And I have the warm memories which makes the present fully alive and filled with life rather than the dull grey ache of the long goodbye. Listen to your soul . Stay well my dear journey mate . Rule of thumb which I wish someone had told me years ago before my own health was deeply impacted- spent more time in the golden places and less in the draining long goodbye. We’re all our kids and grandgirls have . And I need to fight for my own life now. Stay well my dear friend on this journey we didn’t buy a ticket for and don’t know the conditions or length of this unscheduled journey. Love you. And keep Walzing With Bears. Maybe we’ll have a day up on the North Shore where we can fly free. Love, Mary

  9. Mary Beckman Woodward, says:

    Maybe we could do a cherish life workshop next summer up at our cabin and use the arts and nature and meditation to Waltz with Bears and dine on mushroom creations .

  10. Mary Beckman Woodward, says:

    Maybe we could do a cherish life workshop next summer up at our cabin and use the arts and nature and meditation to Waltz with Bears and dine on mushroom creations .

  11. Mary Beckman Woodward, says:

    Maybe we could do a cherish life workshop next summer up at our cabin and use the arts and nature and meditation to Waltz with Bears and dine on mushroom creations .

  12. Mary Beckman Woodward, says:

    Sorry – I don’t know why it left 3 copies . Maybe God wanted to make sure we are Waltzing With Bears, helping others find the freedom we have up north , and celebrating the joys of being alive and creative. Love, Mary

  13. Christine bekiares says:

    Always enlightening and so sad. It is hard to face reality at times, but your ability to express yourself has been a real comfort to others who seem to be caught and pulled in so many directions at one time. Bless you. Continue on a healing path.

  14. Amy says:

    Sorry Nancy. We’re making the same kind of decisions with my mom (really how many times can you listen to someone saying “marrrrryyyyyyy, I need to go potty” in an hour?” Life is not for the weak. I know the couple years with my husband dying of cancer was ROUGH. really feeling for you.

  15. Amy says:

    Sorry Nancy. We’re making the same kind of decisions with my mom (really how many times can you listen to someone saying “marrrrryyyyyyy, I need to go potty” in an hour?” Life is not for the weak. I know the couple years with my husband dying of cancer was ROUGH. really feeling for you.

  16. Amy says:

    Sorry Nancy. We’re making the same kind of decisions with my mom (really how many times can you listen to someone saying “marrrrryyyyyyy, I need to go potty” in an hour?” Life is not for the weak. I know the couple years with my husband dying of cancer was ROUGH. really feeling for you.

  17. Amy says:

    Sorry Nancy. We’re making the same kind of decisions with my mom (really how many times can you listen to someone saying “marrrrryyyyyyy, I need to go potty” in an hour?” Life is not for the weak. I know the couple years with my husband dying of cancer was ROUGH. really feeling for you.

  18. Paulette Christianson says:

    Nancy,
    Your sharing helps to give strength without you knowing. I too am going through FTD with my husband and it is not an easy road to be on. I wonder often what will be his ending and ask God to take him gentlely…..not to suffer.
    Prayers for you and keep those children happy with your blessings

  19. Nancy Carlson Wangstad says:

    Oh Nancy, this must be so hard for you! Our thoughts and prayers are with you and Barry. What an awful disease! I think it is great that you having me time, that helps you alot! Thank you for all the updates, and Barry’s story. We are with you and our hearts go out to you both!!!!!!!!!!!

  20. claudine coughlin says:

    Dear Nancy, I am still thinking about you and praying that God will take Barry home soon so that he can be at peace. Be good to yourself and know that you do not need to visit him every day.
    Love Claudine

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