May 2

Dear Friends and Family, 

 I am constantly struck with how fast dad’s tumor grows. Two days ago, dad was off-balanced and lacked coordination but was still able to walk around the house. Yesterday morning, he was unable to leave his bed without hands-on assistance to get him from bed to wheelchair. It took me a significant amount of time just to get him to sit upright, and even longer to have him plant his feet on the ground. Three months ago, when he was in the wheelchair, he could transition relatively quickly. Now, he often doesn’t hear the cues you offer him, and is often too exhausted to move. This happened virtually overnight. 

Furthermore, dad was totally impulsive yesterday. After over an hour of transitioning him from bed to wheelchair to chair, dad had no energy to describe his wants and needs. He stared blankly into my eyes for minutes at a time, communicating nothing. I sat next to him, asking him yes or no questions. When I walked away for a moment, he started motivating to stand – something he shouldn’t do without assistance at this point. I ran over to him, asking him what he wanted, but getting no information from him. Dad would sit back for a few minutes, and then make moves to stand up again and again. To my knowledge, he had no reason to do this. I think he may have been responding to impulsive cues from his brain telling him to stand/sit/stand/sit/stand/sit. Each day is so different and so much more challenging than the last. It’s so difficult to anticipate where he will be when he wakes up in the morning, and what he will bring into each day. 

Yesterday, there was no way to communicate with him, and he was unsafe without constant and close supervision. I left the house for work after Shingo came to the house. We both were struck by the sudden change in dad’s state, and how impossible it was to deduce what dad was seeking out. Dad continued to attempt standing up and down and up and down throughout the rest of the afternoon, until he collapsed into our love seat in exhaustion. 

Reflecting on this experience from yesterday, I am going to show dad our video today. The window of comprehension and conversation is closing (if not closed). If you’ve waited until the last minute to send your thoughtful, loving videos to dad, now is the time! Miles gets into California (!) today, and we will watch the film this afternoon. 

Thank you, dear friends, for the effort and support you’ve already expressed. If I could insert one piece of advice for these videos, I would remember that dad’s form of brain cancer is terminal, and try as he might, he will not be able to “beat this”. Editing your loving messages has been rewarding, warm, and fulfilling. Thank you so much for sending these expressions of support. We will treasure these notes for the rest of our lives. 

 With love, Mikaela

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