July 3rd – I woke Steve up at 6:00am. This is his new time to get up Monday through Thursday as he has started taking a psychology class those morning at the local community college. He likes to take a class because it keeps his mind working and I like him to take a class because his being home all summer with no plans, and our son being out of school for the summer with a flexible schedule is a bad combination for me unless I find a way to stay out of the house all day.
The class is 8-10:50am. Tuesday Steve went to the class for the first hour only. He found out he received a B on his first exam, which I thought was great, especially considering the first few days he wasn’t sure he’d be able to take the class because he can’t keep up with what is being taught, but being a perfectionist he thought he should have been better. FYI, being a perfectionist with a cognitive problem is a challenging combination as it seems my husband thinks he should have done pretty much everything better.
We had a 10:30 appointment with Steve’s High Powered Neurologist. I’ve learned to make everything surrounding the visit as positive and pleasant as possible, so we took Coast Highway. Despite a June Gloom morning in July, the beach parking was filling up and people were pouring into the open parking lots. The drive went smoothly and we talked on the way. Our son was given the option of joining us, and going to lunch after, but considering he’d have to sit in the waiting room alone for the duration of the appointment, about an hour, I didn’t blame him.
The visit went well. Really well. And a little strange. Each visit begins with Steve taking a series of tests, and the doctor and I talking. The doctor asked about Steve and what he’s doing and thought it was great that Steve got a B on the test. Steve joined us and the doctor went over Steve’s test results from that morning. He had improved on several of his tests. The doctor asked Steve if he’d be willing to give a testimonial at one or more of the doctor’s speaking engagements about the value of exercise and working your brain to slow the progression of MCI into Alzheimer’s. (Okay, I’m not exactly sure of the topic, but the testimonial part is accurate.)
Then the doctor told us that Steve is doing better than any patient he’s had with lewy-body ever, and he’s doing more than any patient he’s had with lewy-body ever. And then he stood up, shook Steve’s hand, and escorted us out of his office, saying there wasn’t anything he could recommend, and he’d see us in four to six months. The news was great and maybe the doctor doesn’t know what to say when things are going well, but Steve and I both felt like we’d been given the bum’s rush, so it was a bit of a weird experience.
Trying to keep the part of the day surrounding the visit as pleasant as possible, I asked Steve if he wanted to go home or go to lunch. There is a nice, outdoor shopping center nearby, and we usually go to lunch at the food court and then visit the pet store after our visit. Steve opted for lunch before we went home. On the way home we stopped and picked up lunch for our son. Steve was exhausted by the time we arrived home, and instantly went and took a nap.
A couple of hours later, Steve was awake and ready to walk to the nearby fireworks stand, so the three of us went for a walk. It was a little over a mile roundtrip. When we got home it was decided we should go to Downtown Disney to walk around and enjoy dinner. When we arrived home after 9:00, Steve was exhausted and went to bed a short time later.
July 4th – I had declared that we could all sleep in so we did. Steve was the last one up, around 9:00. We had a late breakfast, then our son and I ran a few errands. When we returned, Steve was just waking up from a nap. Steve was very tired and having a hard time getting his brain to work. After lunch, Steve laid back down for an hour, then went for a walk. When he returned, he said he wasn’t doing any better and wouldn’t be joining us for a Fourth of July party. I’ve been going to this party since high school. My friend has since moved away, but whenever she’s in town, we go to the party at her parent’s house. Since this was the last year of the party, I really wanted to go.
Our son and I went to the party for a few hours. I was met at the door by my friend who told me her mother was in the hospital and had surgery the prior day, so she was missing the last party at her house. It’s a family party with lots of relatives from the mother’s side. My family and I are the only people there who are not somehow related.
In some ways, I should have lied about why Steve wasn’t there. When my son went to get my jacket from the car, I briefly told my friend and her husband about Steve’s diagnosis and the last couple of years. I received the somewhat typical non-reaction reaction, and honestly, I don’t know how I want people to react.
We left the party and I first asked Steve if he’d be joining us to watch fireworks from the Costco parking lot. Steve hadn’t fixed dinner, so I heated the requested can of soup. I then informed Steve that he would be going with us to see the fireworks. We sit in the car and watch them!
Fireworks show was a success, and Steve went straight to bed when we got home.
July 5th – Steve went to school. After his run, our son and I did some shopping. When we came home, Steve was sitting at the dining room table studying for an upcoming test in his psychology class. It was about 12:30 and I reminded him that in the evening we were attending the parent orientation for our son’s first night of driver’s education. A couple of hours later, Steve was still studying and I reminded him again that he would be joining me at the orientation. A while later I brought it up again and said he WAS going to the orientation and needed to stop studying and rest so he’d be up to sitting in the orientation for an hour. He did.
After the orientation, Steve and I were driving home. I apologized for being so tough on him, but said that it was really important for him to attend the orientation. This is the one and only time our son will be starting a driver’s education class and it’s important. I’ve let Steve miss concerts, track meets, and open house and back to school night at the high school, but I just couldn’t let him not attend this. He understood and was glad he went.
Later that evening I brought our son home from his class. Steve was on the internet, looking into tickets for a series of musicals. This was more than I could deal with right then as Steve was talking to me about seeing plays 18 months in the future, so I tried to avoid any discussion about it.
July 6th – As usual when I don’t immediately support something Steve wants to do, I felt like a witch for not encouraging Steve about the theater tickets. I should be more supportive that Steve wants to do something. I feel that no matter what suggestion Steve makes, I need to do it because if I don’t, he can’t go to the event. Sometimes I just can’t.
While our son was on his run, I told Steve that while I thought it was great that he was looking into things like theater tickets, I just couldn’t purchase an entire series, but would be happy for him to pick out the first one he wanted to see and that when individual tickets went on sale, we could purchase tickets. I also explained that I didn’t like just the two of us going, and with this being our son’s junior year in high school, I thought that right now, our time was better spent as a family. Well, Steve’s thought was to purchase the tickets for all three of us, on a weeknight. With three AP classes in the fall, I don’t think our son will be doing much besides homework at night.
I also pointed out that it was a bit hard to plan because I don’t know what Steve’s energy level will be. Steve said if we had tickets he’d go, but I said that he didn’t know that when he didn’t even attend the backyard party on Fourth of July. He understood my concerns.
Steve headed out to go for a walk, but decided to get his watch. He took one step upstairs and froze due to a pain in his knee that stopped him in his tracks. I brought him a chair and he sat for a while. It is hours later and he hasn’t gone for the walk yet although he says his knee is feeling better. His energy level isn’t what it is yesterday, and I can’t help but wondering if it is my fault for discouraging the purchase of the theater tickets.
And on that note, I will end this before it gets even longer! Originally it was only going to be about July 3rd and 4th, but the longer it’s taken me to write this, the more I’ve had to write!