July 3rd Through July 6th
Jul 6 2012 in G-J's Blog by G-J
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!
Trish said on July 6, 2012
G-J, I admire how you and Steve communicate with one another and how he understands your concerns. I don’t blame you for not wanting to commit to a whole series of tickets several months down the road. With as many school activities as you are all involved in, the tickets could go to waste even if well-intentioned. I can understand what you mean about your neurology visit. Sometimes, I feel so well informed and like we’re making progress and going in the right direction after one of Robert’s appointments and other times, I think the doctor has her own appointment to get to and I leave questionning what even got accomplished!
You know I’m jealous of your time at Downtown Disney! There’s a mexican food restaurant there that I became fond of the last time we visited.
You’ve had such a busy week, I hope you’re able to enjoy the weekend.
Meryl said on July 7, 2012
G-J:
You are an amazing wife and mother and I understand the guilt about sometimes not being supportive but I do agree that you did the right thing as far as the tickets. It’s hard to know from one day to the next what is going to happen.
I also thought from what you wrote that the doctor visit did seem wierd but I was glad that he said Steve was doing better! I am also glad that you pushed Steve to go to your sons orientation.
I hope Steve’s knee is doing better as of today!
Denise said on July 9, 2012
Hi G-J–The juggling act seems to add more balls to catch, doesn’t it? I hope the one ball you’ll let drop is the one marked “Guilt.” it’s good to express your concerns about an expense and your communication about your concern isn’t the reason his energy drops. Taking on guilt that isn’t yours will just make the day (and the relationships) harder.
I get your position, though. You want to be supportive, understanding, you want to make Steve’s wishes happen. it’s good to be supportive and understanding. It’s impossible to be God.
Always good to hear from you because you always make me think!!!
ejourneys said on July 9, 2012
Hi, G-J — There are so many parallels between your post and what I’ve experienced. My partner is also a perfectionist (which, given her actual behavior, has become rather tragicomic). She is also fighting against that perfectionism. But she will come up with all-or-nothing bolts out of the blue — like saying she wants to become a manager (which she has never been) so that she doesn’t have to deal with authority (yeah, right), and she could go get an MBA (uh huh). I’ve learned to listen silently while entertaining my internal “say what?” dialogue. If she tries to push anything, I suggest tabling it for later or saying, “I need to think about that,” or I use some other stalling technique. Because I know there’s something else happening below the surface.
I love the fact that Steve is taking a class at the community college. He’s putting himself out there and taking that class one step at a time.
We actually had similar theater ticket experiences back in 2008. I had season tickets to our community theater, and my partner consistently backed out, always within an hour of curtain time. I’d rush to the theater (fortunately a short drive away) and donate her ticket back for resale. Sometimes she’d want me to exchange tickets for another date — and then she would still back out at the last minute.
My interpretation: she’s thinking, “I want this to happen, so it will,” regardless of her actual condition or of consequences. The more I tried to please her (against my own better judgment), the worse it became. I felt it was my job to make her happy, especially given her condition. That was a losing battle for me, and I had to learn to be — as I wrote in my journal and how I saw myself then — a “heartless b__ch.”
That was an extreme way of empowering myself to say no, but also of conditioning myself to not take things personally. I wouldn’t use the same words today, but I needed to make that attitude shift.
I agree with Denise: Guilt is unwarranted here. You are being realistic based on past experience, period. If Steve were completely healthy and if he gave you every reason to believe that he was fully capable of attending these events, and you still had to say no for some reason (like your son’s schoolwork), that would also be the correct response.
The part that makes this so tough is that we see reality different from the way our carees see it, and our carees believe heart and soul in their reality. I think you did a terrific job negotiating with Steve. You heard his concerns and he heard yours. Believe me, that is awesome.
Energy levels are tricky, too. My partner can get bent out of shape if something in my body language sets her off. This is her disorder talking. My attitude is: It’s not her and it’s not me. It’s not anything either of us has done. Neither of us wants to harm the other. We are both doing the best we can with what we’ve got, and we are dealing with a disorder that Just Is — with all the sadness and frustration (and humor and joy in spite of it all) that comes with it. Energy drain can come with emotional upheaval, but sometimes facing those emotions is beneficial in the long run. They’re just flat-out awful in the moment. *Hugs*
Bette said on July 9, 2012
Hi G-J,
What a busy four days!
You managed each part so well. You are trying to balance the needs of your house, just don’t forget there’s a third person involved. (:
Thank you for sharing those days with us, I enjoy the honesty of your conversations.
G-J said on July 12, 2012
We have made some plans for activities. Steve wants to go to the county fair, and our son doesn’t, so Steve and I will be going to the fair, and our son is very happy that he won’t be going. Since the fair doesn’t open until Friday, and then runs for a month, we have a chance to not only plan when to attend, but adjust our plans as necessary, and purchase our tickets when we get there.
We’ve been discussing attending an exhibit at a local museum. Actually, Steve and I will attend, so that isn’t the issue, the question is whether or not to go on a Saturday night without our son who doesn’t want to attend. If we go on a Saturday night we can also attend a lecture with the event. This item is still a possibility, with the knowledge that we will see the exhibit before it closes in January.
Theater tickets will be discussed on a individual basis, with the agreement that our son will attend once with us. I just purchased three tickets for a classical music concert next March, so each one of them gets their choice of something for the three of us to attend. We attend my choice, a Straight No Chaser concert earlier this year, where our son learned that even though you may not want to do something initially, you might enjoy it in the end!