DELIRIUM … and then some
Minke’s in the hospital. I have told this story what feels like a million times and now I’m finally writing it down. I’ll skimp on some details because I’m tired. I’m writing this on Monday morning at 3 AM.
Minke started acting odd on Thursday afternoon during the informative Pre-Trach surgery Zoom meeting. He was agitated and started yelling. Then we ended the meeting and he was in a full-blown panic attack. Nothing odd about that; I have panic attacks daily.
But Thursday evening, he wouldn’t stop talking. He was wired. Hyper. He wasn’t acting like Minke. His chatter was constant. Nonstop, and some of what he was saying was nonsensical. Some things made perfect sense. But he didn’t sleep at all. Neither did I.
On Friday, his nurse came and I told him what was going on. He agreed that Minke wasn’t himself. He had a low-grade fever and I said I thought it might be a UTI. I know UTIs can cause a change in behavior. The nurse was going to have a doctor order labs and he would get back to me to get a sample. But I never heard back.
Friday night felt the most surreal. He was laughing and saying things that made me laugh but he was talking in riddles. In circles. I videotaped him and sent the videos to my siblings and to his. For verification, I guess. They agreed. There was definitely something wrong. Minke was wired. Manic. Not sleeping, only constant blathering.
I tried calming him down, massaged his head, and played soothing music, to no avail. He just kept chattering away. He seemed like he was on acid. Having epiphanies. Contradicting himself then cracking himself up. He was definitely experiencing some sort of euphoria. But to me, it was so disconcerting.
Saturday morning I called his health team. Call 911 they said. So I did. He was very amusing to the EMTs, but when the time came to put him in the ambulance, he was yelling at them saying they were kidnapping him and he was going to sue! I felt sick to my stomach.
In the ER, he seemed to spiral further. But all tests came back normal. His stats were great. Blood pressure perfect. Pulse perfect. No fever. No pain. But his pupils were as big as basketballs!!
Crazy eyes!!
I had to leave and go take care of Zelda. He got mad at me for leaving without him and my heart broke. I was planning to come back after feeding and walking my girl, but the doc called and said I would be a better advocate for Minke if I recharged my own battery. I was terribly sleep-deprived too. They were admitting him. He was in a safe place where he would get the best care. I agreed with the doc. Hung up the phone and had one of the most gut-wrenching sobs of my life.
I woke up Zelda who was snoozing in the living room and got her to come into bed with me. I needed her. We laid in my bed butt-to-butt and her presence and snoring were soothing. I had uneven sleep.
Sunday morning I spoke with the nurse who said he had a good night. He calmed down. Became more lucid after moving upstairs to his room. He seemed to have a much-needed good night’s sleep. I was flooded with relief. But just as quickly, that relief vanished when the doctor called a little later in the morning. Minke was having severe pain in his lower abdomen. His pain was at a 10, the doctor said. They gave him an antibiotic and some Ativan to calm him down and soothe the pain. It worked.
But the doc was saying this case was a real head-scratcher. She couldn’t find any cause for the pain. She’s been consulting with neurology. And they plan on giving him a full workup of tests.
I went to see him and he seemed surprised, but he was back. He was my Minke again. He thought he remembered everything that had happened, but when I told him what I had seen, he couldn’t recall any of it. He was jittery, couldn’t eat, constipated, but no longer agitated. I thought my presence would calm him. I guess I think too highly of myself, because I don’t think my being there helped him feel better at all.
I did the only thing I know how to do. I brought him treats. See’s chocolates and Jolly Ranchers and Trader Joe’s Raspberry Heart shortbread cookies. Food will solve everything, won’t it? Of course, he couldn’t eat. Wouldn’t eat. While I was there, the doctor came in and spoke to both of us about the course of treatment. He would stay at least another night. Neurology wanted to do an EEG and check his brain. They ordered an MRI. This doc is amazing and extremely thorough and seems bound and determined to find the cause of all of this.
Was it ALS related? Something else? They ruled out a stroke, thank goodness, and from the tests they took, there was no bleeding in the brain. Everything looked good. Except Minke was feeling terrible.
My heart continues to break with each progression of this disease. I’m losing him a little more every day. There will be no happy ending to this story. When this journey is over, my heart will be shattered. I don’t know how I’m still standing.
Exactly ten years ago today, we met for the first time. We knew fairly early that we were meant to be together. B’Shart. Ten years. It feels like yesterday.
July 4, 2013—B’Shart