We are at rock bottom. Mark is delirious. Not the funny kind, although his wry wit still pops out from time to time. He’s hallucinating. He’s disoriented. He’s agitated. He’s worse than I have ever seen him. It’s utterly fatiguing and extremely sad.
The surgeons insist on not sedating Mark unless absolutely necessary, as they continue to manage the precarious healing from this surgery. Even with a 24/7 room sitter, Mark is battling for escape. He is wired. Perseverating on getting everything off of him. Yesterday, it took two to four of us to manage him, trying to distract him and prevent him from hurting himself. He is surprisingly fast, flexible, and strong. He was physically fighting us 90% of time that I was visiting. For all that he sleeps at home, I can not believe he is not sleeping more. For all that he sits at home, I can not believe that he can find this kind of power. As he was struggling to sit up for the nth time, the aide said, “You must have a six pack, Mark, with all this abs work you’re doing!” Mark, mishearing, replied, “I have so many odds, I’m even!” And kept fighting her to get up. Earlier in the day, he kicked an aide in the head, leading to his last free body parts, his legs, to be restrained. He tried to bite his mitts off. He wrapped his legs together and managed to pop off a drain bulb, spraying the aide with blood. She was incredibly steady and said, “You got your blood on me, Mark, that’s not nice.” He looked at her, wild-eyed, and said, “Hehehehehe!” I said, “Use your power for good, Mark,” and he cried back, “Evil!” He was out of his freakin’ mind. He kept calling out for help. He kept telling nurses he was being picked on. He told us that he was going to take us to court, and that the judge would put us in jail for six months for what we were doing to him.
I am numb and feel like I am running a daily physical marathon. My muscles are tired. I have only one focus, and that’s to keep going. It’s ugly right now. Keep going…keep going…keep going….
When I checked into the hospital today, the staff person put my visitor’s bracelet on my wrist and said, “This gets you half-off drinks during happy hour. All the rides are running, and the swimming pool is open.” It took me a minute to open up my thinking to process the quiet humor. “That’s good,” I replied, “I can go there in my mind.” “Good,” he said, and waved me through to live another day just like yesterday.
It is sad that he is going through this but it is good he has the ability fight. Just think if he was a vegetable. Hopefully this will pass soon. We are all praying for the two of you.
Jim Levy
Thank you, I passed along your well wishes to Mark. He says hello!