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.
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.