No, I am really not trying to kill you Barry.
After staying in Red Wing for the month of October, I hit the ground running in November. I had three out-of-town speaking engagements along with Barry’s birthday on Nov. 3. After the first trip, I organized a little party for him at his care center. I invited some of his old friends and, of course, my family. I brought beer, snacks and some White Castle burgers that were Barry’s favorite. His artwork in the 1970s revolved around the White Castle burger and the five holes in the hamburger patty. He did large paintings of the burgers and also incased them in a liquid plastic that eventually hardened. I always teased him that I was glad he became more of a businessman rather than staying a fine artist. Not many people wanted White Castle art hung on their walls.
I felt a bit frantic the day of his party as more and more people showed up to say hello. I made a lot of mistakes that day. First, so many people overwhelmed Barry. He became a bit agitated, but I wasn’t really paying attention to that. I decided to first give him a beer, although he hadn’t had a beer in a long time. I chose a strong one that he quickly sucked down with a straw. Barry has been on pureed foods for a couple of months now — but in my frantic state, I decided he could handle a burger. The burgers seemed so soft and small. What could happen? Well, after a few bites, he began to choke. The entire group stopped talking at once. It was a scary moment as Barry gasped for air, unable to swallow the greasy bite. After a few slaps on the back, some of it went down. I scooped out the rest from his mouth with a spoon. His days of eating a burger were now forever over. People resumed visiting with each other once the crisis
My son Mike took me aside and said, “Mom, calm down.” I needed someone to tell me that I was trying too hard for Barry to have fun. There is absolutely no fun to be had in advanced stage frontotemporal demential (FTD). I took Barry over to a couch a little removed from the crowd and two of his old buddies from high school sat with him. That made things a bit better until the beer got to him. Soon he was looking cross-eyed and listing from side to side. It took two of us to get him to his room and into bed – where he passed out. The party ended quickly as the guest of honor slept it off in his room. I think everyone was happy to get out of there. I know I was.
The next morning as I walked with my friend Talla, I told her about the party, the choking and the beer. I wondered aloud why I was so frantic. She said, “You were just trying to make everything seem normal like it used to be.” However, nothing is the same now no matter what I do and things will never be normal again. Was I trying so hard on Barry’s behalf, or was I doing this for me to have something normal in my life?
Next time I almost killed Barry
Life went on as usual for a few weeks after the big party. With my travel finished, I could check on Barry each day and take him for a stroll. Barry is now quite thin and shaky when he walks. On this day, I felt a bit frantic again and wanted him to get his walk over because I had a long list of things to do as I headed into the busy holiday season of selling books and doodles. I also wanted to work on a new book idea.
We were walking the corridors as usual, but I let go of his arm for just a minute when I turned to say something to the nurse. Barry kept walking toward a woman parked in her wheelchair near the elevator. His leg caught the edge of her chair and down he went! Dead weight going down hard. The sound of his head hitting the wall was so loud that my first thought was that he was dead. I screamed and I heard another scream, probably a nurse. Everyone jumped into action, but not me. I stood there unable to help or do anything. I felt so bad for Barry but, selfishly, I was thinking that now I wouldn’t be able to get everything done that I needed to do that day. I would be planning a funeral instead.
But the nurses got him up. Although his head was badly bleeding in two spots, he could walk. Paramedics were called and then it was off to the hospital for stitches. I felt bad for poor Barry — and for me because I knew the rest of the day would be spent sitting at the hospital waiting and waiting. It is hard to admit that I was thinking of myself as much as Barry!
The doctor at the hospital wanted to do a CT scan on Barry’s head, and I told them no – go read his paperwork. We waited and waited, and after a while they gave him medication to help him relax so they could finally put some staples in his head. He was shipped back to the care center bandaged and bruised. I felt guilty because he was injured on my watch, in pain and deeply confused. It broke my heart to see him like this — thanks to me and FTD. I wonder if there will ever be a way to let our suffering loved ones go when there is no longer any hope. After these recent, frightening incidents on top of everything else, I think a lot about this question.
But don’t worry Barry, I am not really trying to kill you. However, if there were a legal way to end your suffering, I would do that for you in a minute — as I would like you to do for me. Now I am afraid to walk Barry, afraid to give him a beer and anything except pureed food to eat.
His world is confined to lying in bed just waiting. I sit next to him waiting as well.