May 15, 2022

Jordan graduates from law school on Friday! Woohoo! Then she'll review for the bar exam until the end of July, and start her new job in mid August at the Children's Law Center. I'm thrilled for her, but there's some bittersweetness in it. John would have been so very proud of her. He would have been her champion throughout school and the bar exam. But he doesn't understand. And he doesn't experience any joy in his daughter's accomplishment. My dad would have been extremely proud as well. So there's loss even in this success. Yesterday it took me over a hour to get John to take a shower. I tried asking politely. I tried cajoling him. I tried begging. I tried crying. I tried forcing him. I don't know what finally worked, but it was a big relief when he finally got in the shower. It had been 3 days since his last shower so I couldn't let it go another day. Then this morning he got in the shower like it was perfectly reasonable. No fuss at all. I don't know why it was different than yesterday, but I was certainly glad it was! Yesterday he was quite upset about the smell of my lotion. He said it was killing him. Today I opted for unscented so as to not ruin the good thing we had going this morning! Earlier this past week John was upset that he hadn't seen Edna and the other ladies at EasterSeals. of course he had just been there an hour or so earlier and had spent the whole day there. But he didn't remember any of it. Last night a couple of John's friends came over bringing a delicious dinner with them. John didn't talk a whole lot, but he was happy they were there and commented about it afterward. As Alzheimer's chips away at John's essence, I try to live in his world and meet him where he's at. This is becoming more difficult as he expresses less and less about what he's thinking. He acts out, but doesn't describe what's going on in his head as much anymore. He'll often say he's afraid, but he can't say what he's afraid of. Time is our enemy. It's weird how I find myself talking about him in the past tense, while he's still with me. But it's also becoming more difficult to remember what he used to be like, as today's memories cloud the old memories even for me. I miss my husband being my husband. That relationship is gone. He doesn't remember that we're married or what that would even mean. He knows that I take care of him and that he can depend on me. He knows my name. Although he sometimes asks me to 'get Susan'. I tell him that I'm Susan, and he responds that he's tired. I think he uses the word 'tired' to mean that he's confused. It's better to be tired than confused, so he goes with tired.

May 1, 2022

Things have been pretty crazy lately. John has been increasingly agitated and angry. Friday morning was the worst. He was difficult with me while we were getting ready. Then when Jordan tried to take him to EasterSeals he refused to get in the car and was yelling at her complaining that the car was his and she shouln't be driving it. He called her a child, and ranted and raved about getting his life back, about how much he loved that car, and no one was helping him. She called me and between the 2 of us we finally convinced him to get in the car. Once he got to EasterSeals he didn't calm down. Edna told me later that she wasn't able to take her break because no one else could handle him. He didn't relax until the afternoon. He has ramped up his complaining about the car. He keeps insisting that he needs a car. He's furious that Jordan is driving the car that he loves. Yesterday he was pointing at the toaster asking for something to eat. I assumed he wasn't after toast, but he was asking for a poptart. He said 'I don't know what is or what isn't.' Then while he was eating the poptart he asked 'Am I doing this right? Is there anything I should be doing?' I said 'Just eat.' He said 'I don't think that's gonna go well.' He said he couldn't eat because I wasn't listening to him. Then he added 'I'm having a great trouble of time figuring it out.' He was also very concerned about his eyes. That's a consistant worry of his. He asked me to see what was wrong with his eye. I suggested he wash his face and wipe his eyes, and for some reason that seemed to satisfy him. This morning I made a really good breakfast sandwish (if I say so myself!). He was confused about how to eat it, asking 'what do I do with this? What do I do next?' He has also been concerned about the long ties on his pajama pants. He fusses with the strings, asking me what to do with them. He ties them over and over again. Twice this weekend he couldn't find me in the house, and got very worried. He was roaming around looking for me inside the house and out. It's the out part that has me concerned. I'm upping his morning Seroquel medication again. We don't see the Dr until June, but I think I have enough pills to play around with them a bit. On Saturday one of our brother in laws came over to take John to the movies and out for pizza. I used the time for some shopping therapy! That was really refreshing. When I take John with me I fret about being in the dressing room with him waiting for me. I worry that he might forget where I am and start looking for me. So it was nice to be free of that worry while I shopped. Then that evening John's brother and his wife came over with dinner. It's always good to see them. They saw John more agitated than I think they've seen him before, or at least saw him agitated for a longer period of time. I feel supported when someone gets a glimpse of what's really happening these days and understands some of what we're going through. Last week was our 32nd wedding anniversary. It's been a ride! But so many more happy memories than the shit we're in now. So I try to focus on all the good years. Of course I wish we had good years together ahead of us, but that's not our path. Still, we've had way more good times than bad, so I know we're blessed.