Yesterday we had a big birthday party for my 4-year-old grandson Storm. His parents, my son Brad and wife Avery hosted the party here at the house. Steve was really looking forward to seeing everyone. It was tricky because the party is on the main floor of the house and Steve is stuck upstairs. I was planning to rotate people through his room as the party progressed. As it turned out, Steve slept through most of it. When Storm opened presents, I shot a video of everyone saying his to Steve and showed it to him when he woke up for a few minutes. Then our grandson Marlo Face Timed him when we sang Happy Birthday. I gave him some chili which he didn’t eat – that’s a first! But he gobbled up the ice cream and cake, at which time the family visited him. He told me he was going to die that night. He asked the visitors several times if they were on a death watch. They said no they were just visiting him. When they left he asked me about it and I said he was the only one who thought he would die that night. He didn’t remember telling me that.
Today Steve is not sleeping as much but is extremely drowsy. He had some very severe pain this morning in his shoulder (related to the tumor in his neck). I medicated him heavily, and the music therapist came over and he just loved it. Very relaxing. He hasn’t had severe pain since. We also got a visit from the social worker, Joe. He talked to me about the stressors of caregiving and it helped a lot. I know I am a positive thinker, but he gave me even more suggestions about how to look for the good in things. He talked to Steve for a few minutes too.
Steve is beginning to live more in another reality. For example, he asked me to turn off his socks, and said he was happy he did not need extra sauce on this music therapy. He also asked me if his pee was turning to metal, and if his metal bed was turning into pee, which he thought would be a good idea. He is mostly coherent, but so very drowsy.