June 20, 2021

Today was Father's Day. Danielle came over with her little baby and was here all afternoon. She brought lunch - McDonald's. It was John's choice. Jordan was here later in the afternoon. Tim sent a message to John and tried to call. Ben texted John and told him he loved him and missed him. I had to show John the message because he doesn't know to check his text messages, and he said it was very nice and to tell Ben he loved and missed him too. A few minutes later John showed me the message again, and said "That's my boy!" and he was all choked up. It was a really nice day. John did spend a lot of time trying to get us to take him to buy a car today. He remains very angry about not driving. Oh and I got him his favorite lemon meringue pie and he had his first piece for breakfast! John has continued to grow more frustrated, agitated and confused. He's increasingly difficult in the morning and has been giving Jordan a lot of misery about getting in the car to drive to Easter Seals. He's unsure about the things he needs to bring with him (despite that I have it all ready for him) and worries someone will steal his stuff while he's gone. That's another aspect that seems to be increasing - a paranoia about things being stolen from him. Anyway Jordan's started calling me when he refuses to leave the house, and then I can cajole him into leaving. It's quite frustrating for all 3 of us. Often when he comes home from Easter Seals I'll find all kinds of things in his pockets and backpack. In addition to books and pens, he might have a bunch of paper towels or tissues folded up in his pocket. Or little comic book action figures in his pockets. Sometimes he puts a night light in his backpack. Or we'll run to the grocery store and I'll realize he's carrying 5 or 6 pens with him, as well as a few toys. I've also noticed he's swearing more. Especially in the morning. We've been increasing one of his meds hoping to address his frustrations, but it certainly hasn't worked. I'm not sure if it's playing a role in actually making things worse, or if it's simply an advancement of the disease. We have an appointment with the psychiatrist this week, so I'll address that with her. Edna at Easter Seals has also noticed in increase in John's behaviors, so it's not limited to home. There's a new drug that's been approved by the FDA for Alzheimer's Disease called Aducanumab. It's the first drug that attacks the disease process instead of just it's symptoms. It's supposed to slow the progression. Apparently the drug is only approved for people in the early stages of the disease, or even those who have Mild Cognitive Impairement (which can be a precursor of Alzheimer's). The treatment is intended for people in the early stages so that makes the drug unavailable to most people. And from all I've read, that makes the drug unavailable to John. However, I plan to discuss it with his Neurologist at our next visit. I'm not very hopeful, but it certainly never hurts to ask. At the very least, this drug is a first step toward addressing the disease itself, rather than symptoms - which is a very significant step forward in the treatment of Alzheimer's Disease. I'm also planning to look into medical marijuana. It's been discussed in a couple support groups I participate in, and some people have said it really helps. I'm interested in drops or gummies that might help calm John down, and help reduce his anxiety and frustrations. Ben encouraged me to look into it and I think it's worth a try.