Barry’s Journey

Feeding Barry, June 2016

A few weeks ago, I met with the hospice workers and two staff members at Barry’s care center. I wanted to tell them that Barry should no longer be fed. No one should have to live like he is, stuck in bed all day. He is just skin and bones now, weighing under 120 pounds.

I was firm in my resolve to have everyone stop feeding Barry. But first I would head up north for a few days to write, hike and think about it one more time. When I got home, I decided that from then on, the care center workers should bring food to his room and place it in front of him. If he could feed himself, he would eat. We all know that he can’t feed himself, so he wouldn’t get any food at all. I was sure this time that I would not back down on my resolve. I would not chicken out. I thought for certain that I would stick to this decision because earlier that week Barry said to me with a clear and quiet voice, “No more pills.” But could it be that he was just echoing what he may have heard on TV? I wanted to think he was telling me that he was ready to go.
flooting
At the meeting, I told them all about my plan for Barry and eating. The hospice nurse tried to explain to me that Barry is not actively dying at this point. So the idea of holding back food is different for him than for someone whose organs are failing. Barry’s organs are working just fine right now. FTD will kill him eventually and he will, in time, totally stop swallowing and that will be the end. But he wasn’t there yet. One nurse turned to me and said that Barry might live another six years! What? Six more years of lying in a damn bed all day with me sitting by his side? She asked me if he could have water or ice chips during this time, and I really didn’t know what to say. She said it should be all or nothing. She said it is difficult for us to know what he would go through, or suffer through, because he is not in his last days.

They explained that withholding food in these circumstances must be approved by the care center administration. Wow, my head was spinning, I became confused again. My initial strength and determination withered away as the hospice person explained the difference between someone in their last hours or days and Barry’s current status. He apparently is not in his last few days.

The next day, I went back up north to think about it all, again. I left knowing that I might not have the guts to stop his food. I kept asking myself what if he really wants the food but can’t reach for it? What if he suffers more and longer? What if he really feels hungry? Barry hated to be hungry and would nearly faint if he didn’t have food every few hours.

I was once again trying to figure out what to do. I don’t know how strong Barry’s will to live is. I think I know what he would want me to do — but am I totally sure about that? So I am back to where I started, totally confused, frustrated and uncertain. I never thought this would be so hard.

As I hiked up north thinking about all this, I looked for some sign pointing to what I should do. But instead I saw beautiful wildflowers everywhere and the Northern Lights. If these are signs, what are they telling me?

When I got home from up north, I went to see Barry and he actually grabbed my arm and held on. What was he trying to tell me? All the questions I had about what I should do with his feeding were answered in a simple talk with his nurse, a man from Kenya. I told him I was pretty sure I was not going to stop feeding Barry now. He said, “That is good because Barry is not done yet on earth. There are still somethings he needs to do. When those things are done he will go.”

I replied, “Do what? He can’t even get out of bed.” The nurse continued, “Barry knows more than you know. He needs to take care of things in his mind. There are still somethings he needs to teach you, as well. You are still learning. When that is done, he will go.” Then he added, “You need to be patient.”

All the hiking in the world would not have brought me to this place of peace that came after a simple talk with this wise man. I know now that I will wait and continue to feed Barry. I need to let him finish whatever it is he needs to do, and I will be there, learning and waiting right along with him.

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22 comments on “Barry’s Journey
  1. D Ringham says:

    I cannot fathom what you are going through. We all think we know in theory what we would choose for ourselves if faced with this type of situation. But then, what if once there, we changed our mind. What to do. I sympathized with the dilemma. Can only imagine the doubts. My heart goes out to you. ❤️

  2. How unbearable for you. For me, it was so much more simple. Alan could no longer swallow and so, he could no longer eat or drink. Before that, someone fed him, but his intake was so little, he lost the weight anyway. He lasted for eight days after his last drink of thickened water (which he aspirated anyway). There was no need to withhold, he just refused to take it anymore, as if he knew it was the end. I feel your pain Nancy, and cannot imagine what you are going through. The man from Kenya is wise. No need to punish yourself, just let what needs to happen, happen. It’s torture, I know. Barry will decide when it’s the end. <3

  3. Moira B Rummel says:

    Dear Nancy, Your journey is an adruous one! But the nurse is so right, Barry won’t open his mouth if he does not want food. My husband was on pur√©ed for several years until he was not hungry anymore. Hugs and prayers, you can be good to your self and not go as often if you find it hard,”’ your hiking is great therapy sounds like!
    The staff have watched many more than we at the end of life, wise ones help us understand.

  4. Moira B Rummel says:

    Dear Nancy, Your journey is an adruous one! But the nurse is so right, Barry won’t open his mouth if he does not want food. My husband was on pur√©ed for several years until he was not hungry anymore. Hugs and prayers, you can be good to your self and not go as often if you find it hard,”’ your hiking is great therapy sounds like!
    The staff have watched many more than we at the end of life, wise ones help us understand.

  5. Christine bekiares says:

    I am pleased you have an answer that leads you to try to understand what he is going through. It is not something we can be sure of. Find peace in your heart! You are so kind and patient!

  6. Nina Crittenden says:

    Sending love your way, Nancy!

  7. Karen says:

    No words. Sending gentle hugs.

  8. Chris Hanson says:

    Thinking of you and admiring your courage.

  9. Shannon Smead Samuels says:

    Aw, Nancy, that one brought tears to my eyes. I guess it is a blessing you received another perspective that helped you make your decision.

    I like that…”You are still learning. When he is done he will go.”

  10. Barbara harrison says:

    Big hugs.

  11. Is he not in a hospice program? I know they are different everywhere, but I have experience with my mother’s death and my husband’s and found they explained so many things to us when we needed to understand them, and explained them very well. I do not think they would ever have said the things to us that you report Barry’s nurse saying to you. A person can be in a hospice program at home or in a nursing home.

  12. OK, I just realized that was a hospice nurse….Barry’s situation is obviously different from my mother’s or Paul’s. So sorry.

  13. claudine coughlin says:

    Dear Nancy, I wish there was something I could say or do to help you through this stage. I can only say to hold on to every day you have with him. Tell him everything that is in and on your heart. Maybe retelling of some of your memories of days gone by would help. Just know that everyone loves you and are praying for you and your family. Its not any easy road. Love, Claudine

  14. Joan Mooney says:

    Oh Nancy,
    Thoughts and prayers.
    Love Joan

  15. Aimee Bissonette says:

    Thinking of you, Nancy. Hope the hard times are balanced a bit by walks in the woods and beautiful auroras.

  16. Ellen says:

    Nancy, I’ve never met you, but I’ve come to know you through this blog. I salute your courage in trying to do the right thing for Barry. Decisions like this are SO hard. I’ve been through end of life decisions with my parents, whom I loved very much. As family, we want certainty and clarity and there is so little. I’m glad you have a good team helping you care for Barry. I pray for peace, strength and wisdom for all of you.

  17. Sandy Boren-Barrett says:

    Nancy, you are a gift, to Barry and to us all…and you are loved. sandy

  18. Sandy Boren-Barrett says:

    Nancy, you are a gift, to Barry and to us all…and you are loved. sandy

  19. Janet Cruse says:

    Oof. What a blessing to have met the nurse from Kenya. My prayers your way. I hope you feel uplift from all the people who keep you and Barry in our hearts, Nancy. Thank you for sharing your experience. One foot in front of the other. Keep on.

  20. Paulette Christianson says:

    Nancy, my life follows right along side you as my husband has the same. We are some steps behind you and Barry but my how I can relate. Today I Had anger along with hurt and frustration with everything. I often wonder what is going on in my husbnd’s head during all of the changes and we can’t communicate any more verbally. I see that blank look and sometimes he just stares at me and today it was as though he wanted to say something. Oh I don’t know.
    Your blog has been good for me to read and some times not for the feelings that come about. I then have to go forward and find the positive again. My art becomes my therapy.

  21. Paulette Christianson says:

    Nancy, my life follows right along side you as my husband has the same. We are some steps behind you and Barry but my how I can relate. Today I Had anger along with hurt and frustration with everything. I often wonder what is going on in my husbnd’s head during all of the changes and we can’t communicate any more verbally. I see that blank look and sometimes he just stares at me and today it was as though he wanted to say something. Oh I don’t know.
    Your blog has been good for me to read and some times not for the feelings that come about. I then have to go forward and find the positive again. My art becomes my therapy.

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