May 18, 2024

Our 4 kids gave John a leather lazy boy type chair as an eary father's day gift. It's perfect! He sits in it and I move it all the way back so he's lounging like a lazy boy! He seems to really enjoy it. He rests there, taking a break from his constant patrol around the place. He continues to take his shoes and socks off, and leaves them in various places around Crescent Landing. One of the residents worries about his bare feet and gathers his shoes up and hands them to me when I'm there. It's strange - he rarely walked around our house barefoot, but that's his go-to now. He also hikes his pant legs up to his knees so he's quite a sight. John's language is very limited now. When I was there today for about an hour and a half, I think he said 2-3 words. Sometimes he speaks a bit more, sometimes less. Today he looked directly at me a couple times and made eye contact. He laughed a little. I wonder if he knew who I was in those moments. He occassionally uses my name, so there's definitely recognition sometimes. I'm a familiar person to him, and he responds to me, so I think there's still a comfort level there that he has with me. Another odd thing he's doing these days - I've received numerous calls that they've found John laing down on the floor. They've said he doesn't appear to have fallen, but he's resting comfortably on the floor. Then a couple weeks ago I was there with a few others and we were sitting outside in a covered patio area. John was next to me, and then very intentionally lowered himself off the bench and down to the ground. Soon he layed down on his side, then rolled onto his stomach and was stuck there. He said 'Sue. Help.' So a couple of us picked him up off the ground and got him back on his feet. We took him back to his room thinking he might want to rest, but he wanted no part of that! Apparently this behavior is his latest thing and he seems to stretch out on the floor to rest. Weird! In general John is pretty stable and doing well. He seems content most of the time, and has a fairly good disposition. He still fights things he doesn't like - getting his teeth brushed, clothes changed, showering, etc. - but I think he's as content as he can be given the circumstances. I continue to visit him most days, and try to observe the slow progression of the disease. I miss him. I miss who he was. I miss who he should be in the lives of our kids and grandkids. I miss all the joy he's missing. There's still a part of him left - he still pats us on the back, and acts like the gentleman he's always been. I try to find some peace in who he is now, and try not to be angry about the many layers of loss. It's a cruel disease with one death after another. He's gone, but he's not. He's with us, but he's not. There's a profound sense of loss that feels like death, but he's not dead. Without closure, the losses continue their slow march.