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.
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.