August 13, 2023

Last weekend a friend of John's, with help from another friend, put on a beautiful party in John's honor. About 10 guys from high school came as well as most of John's siblings. Tim and his family were here, as was Danielle and her family. Many of the guys who came played football with John, and their beloved coach came as well. It was a beautiful tribute to John. Maybe a living memorial of sorts. They brought all the food, and amazing chocolate cake, and delicious wine. There was tons of food and drinks and everyone hung out, caught up and shared memories. We dug up some old football memorabilia too and had that on display. I thought it was a reflection of the school that Servite is, and a reflection particularly on their class and the bond they share. It was an act of love and kindness that each person came. I definitely felt supported and appreciate the lifelong friendship that John has had with each one. I wish he could have understood it all, but he definitely seemed happy there in the midst of everyone. It was definitely a special night and I appreciate that everone came and I appreciate the contributions that everyone made. It was really good to spend a couple weeks with Tim and his wife and son. We hadn't seen them in almost 5 years because of the covid pandemic, but as soon as they were here it didn't feel like anywhere near that much time had passed. They were able to spend some time with John and understand where he is in this damned disease. We also had a big family party at John's brother's house while Tim was here. We were able to get a family picture of John and me with the kids and grandkids. Most of the greater Law family was there and it was really fun to be together. John continues to have trouble identifying the toilet so I have to monitor him closely. I'm fairly amazed he hasn't had an accident recently. So far so good. I've been having a lot of trouble getting John to allow me to brush his teeth. He refuses to open his mouth. I've discovered that if I pry something else between his lips, that he'll finally open his mouth enough that I can shove the toothbrush in there. Then he allows me to brush his teeth. Recently I took John downstairs for breakfast and he wouldn't eat. Not even his favorite chocolate Entenmen's donut. I gave up and we returned back upstairs and I started the battle to brush his teeth. When I finally got the toothbrush in his mouth I discovered that one of the pills I gave him an hour earlier was still in his mouth! So that was the problem! It's happened again about half the time. One morning he spit out the pill so I shoved it in his donut and he ate it. I'm thinking that might need to be the plan from now on. Tonight when I tried to give him dinner he grabbed my water bottle off the counter, screwed off the lid, and the next thing I knew he had the bottle cap in his mouth! I was worried he might swallow it or choke on it, but after about 10-15 minutes he finally spit it out and ate the cookie I'd been trying to bribe him with. Earlier today we were having lunch at a restaurant with our daughters and family, and John refused to sit at the table. He stood next to the table and eventually ate his sandwich still standing up. Fortunately we were outside on a patio with only one other table so it wasn't a big problem, but it bothered me that he wouldn't sit down. We've been having some trouble in parking lots lately. John moves quite slowly and last week I couldn't get him out of the middle of a busy parking lot at Target. Then he refused to get in the car when it was time to leave. Finally he did, but people were annoyed with us. And the parking lot situation is dangerous. I think I need to talk to our Dr about getting a handicapped parking sticker so we're not out in the middle of the chaos. He's also opened the car door a few times while I'm driving. It's always been when I'm driving slowly, but I'm worried he might try that when we're driving fast! On another car note - he sometimes has difficulty getting in the car when we're parked on a curb. He is confused by the gap between the curb and the car. In general, it's getting pretty difficult to take him out in public. He can't focus enough to follow me anymore (he always walks behind me). So when we're walking through a store for example, I'll call to him so he sees me and he'll start to follow me again. But in a moment he'll just join whoever is walking near him and wander off with them, so I constantly have to keep looking back to make sure he's still with me. If no one else is around, he'll just stop where he is and stand still. Sometimes I call to him and he looks at me in confusion and won't move. So then I grab his hand to bring him with me, and he'll yank his arm back. Soon he'll walk with me again. It's so strange. And very frustrating. A simple run to the grocery store to pick up a few things is exhausting. Last week John had an appointment with the retina doctor. He had a retinal detachment some years ago, so we have an annual appointment to follow up. This time the appointment was a total disaster. At the start of it, he wouldn't let them put drops in his eyes to dilate his pupils. Then he wouldn't let them check his vision. Soon we were sent back to the lobby to wait for the doctor. The doctor tried again to examine John's eyes but John was loud and defiant and wouldn't let anything happen. So the doctor said that there was no point to return unless we were aware of any problem that might occur with his retina. I'm not sure how we'd ever know if John had that kind of problem, so it is what it is. Meanwhile, that appointment was a waste of everyone's time, and it was kind of embarrasing to me. It was like being there with a child throwing a tantrum. Everyone was very kind though, and the doctor was surprised that John was still living at home. (The doctor asked where John was living and when I answered his eyes grew wide and he commented that it must be difficult.) All that said, John is sometimes easier to handle. He stands there or wanders around the house, but when I ask nothing of him, he's content. Yesterday I took him to work with me on a Saturday. No one else was there, and we stayed for over 4 hours. I worked and he stood there. He was no trouble at all and I was able to get a bunch of stuff done. Anyway, this post is very long and I'm not willing to reread it to make sure I've made some sense, or to try catch a few of my typos. Hopefully it's not too rambling. We're struggling along, having some good days and some rough spots. Trying to be thankful for our blessings and doing the best we can.