Short Update

The timing is harsh for this whole COVID-19 thing. Mark's facility is closed to all non-essential persons. Technically, if I needed to go, I could, but no other people (including my kids) are allowed. I guess it's God's way of forcing a break from our weekly visits that wear on me if I go, but leave me emotionally exhausted from the guilt if I don't. His 1:1 aides are still permitted, but will undergo a screening each time they arrive for work.

The timing is harsh because coincidentally, Mark has also taken a fairly sharp decline over the past couple weeks. We are all (aides included) struggling with this, and he's beginning to need services from the nursing staff regularly. He is now fully incontinent, and seems very "glazed over", with very little interaction with myself or the kids when we video chat, which isn't nearly as frequently as it had been. I was able to visit for a half hour on Wednesday when I went to see him, and although I could convince him to look at me in the eyes, he mostly was just making strange noises with a very occasional, almost incomprehensible phrase here and there. "There's a chipmunk with an acorn" and "You came to visit me" were the only two I could understand. Otherwise, it was just this almost humming/crying type sound that is fairly disturbing. It reminds me of that sorta "der" sound I recall from high school days when people would be making fun of someone they deemed "retarded", which now seems so, so incredibly insensitive. It's hard to watch :(

I miss this man so, so much. He was the BEST husband, guys.

This is what Frontotemporal Dementia looks like. This is what it does. It's devastating to watch. I will spend the rest of my life advocating for a cure until it comes. No one signs up for FTD. I will champion for this man until he breathes his last and meets his Lord and Savior.