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Steve has always been a huge sports fan. Baseball, football, basketball–college or pro–there is always a game on in the TV of my memories of him. I have a head full of memories of Steve lounging in his leather recliner or directly in front of the TV (like a 5 year old watching cartoons) for a big game–with the ooh’s and ahh’s and c’mons coming fast and furious until the final buzzer.

Those memories are distant now but I’m thankful they’re still so clear. He’s not the same guy he’s always been due to his Lewy Body Dementia but Real Steve is still in there. It’s just that most of the time, he’s tucked tightly under the cloak of this hideous disease. Even still, we do our best to not let it get us down and make lemonade daily!

We’re Ready

In the spirit of focusing on the little moments, I was thrilled yesterday when I found out the Red Sox vs. Astros playoff game was on at 5pm EDT. It’s a perfect time for Steve to watch I thought. And it was.

He had a good afternoon nap and we settled in at 5pm to watch the game. We brought a chair from the kitchen table and set him up with a TV dinner stand. We were ready. But what ensued was an emotional roller coaster ride that I was entirely unprepared for.

Started Up

The game started and the Red Sox scored a couple of quick runs. The smile on Steve’s face was noticeable. This was good. Then, in the middle of the first inning Steve made a typical Steve comment about the commercials being too frequent, long, and  loud. “What’s going on with the damn ads” he said.

It wasn’t much but it was familiar. He’s always been driven bonkers by the commercials during the broadcast of games he was watching. They’ve always gotten under his skin. So this seemingly innocuous comment was really good. It was real Steve and I was grinning ear to ear (while I turned the TV down 🙂 ) .

Then came the bottom of the first inning and the Astros quickly got a run back. The score was now 2-1 and Steve was making complaining about the Red Sox pitcher. I’d heard some version of these complaints many times in the 18 years I’ve known him. Real Steve was still in the building and it was fantastic. Now my cheeks were starting to get a little sore from the perma-grin on my face.  

Going Down

The questions came out of nowhere. I should expect it now but I wasn’t expecting them. “What are we watching here? “Who are we rooting for”? They hit me like a sucker punch. A half second earlier I had been lost in thoughts of how nice it was to have real Steve with me in the moment….and then, boom. Faster than you could say Mookie, we had crashed back to the reality of confusion and uncertainty. Steve sadly had no idea what we were watching or who was playing.

Stunned by the wave of emotion brought on by a stupid baseball game, I asked Steve to stay put for a minute. I briskly walked to the bathroom, shut the door, switched the fan on knowing what was coming….and exhaled. Then I cried.

This disease is taking everything from him, why can’t it let him have the stupid baseball game?

It felt like I was in there for an hour but in reality it was a minute and a half. Let it out and get on with it. Feeling better (I guess), I wiped away my tears, quickly washed my face, exhaled and headed back to the couch.

We continued on, dealing with the ads and watching the next couple innings (mostly in silence). Knowing real Steve was so close to the surface, I tried to coax him into conversation but had no luck.

In the fourth inning, Steve told me he was tired of the game and wanted to go up to his room. So that’s what we did. In the middle of the 4th inning, of a playoff baseball game for his beloved Red Sox, we went up to his room. Not to watch the game. No, just so he could to lay down. Real Steve was being robbed.

This disease is taking everything from him, why can’t it let him have the stupid baseball game?

This is one of the hardest things for me to grapple with now that Steve lives with us. Most days we’re so in the weeds of the day-to-day and time flies by. Detached from the emotion of it all and just going about the day. Then, at seemingly random and definitely unexpected moments, I’m sneak attacked by sadness or anger or frustration about the situation.  If you let your emotional guard down, you are punished. That’s how I feel.

Last night is a great example. I’d been looking forward to 5pm all day. I was excited for the game and excited for Steve to be able to watch the game live.  In my heart of hearts, I knew the chances were slim that he’d get through even most of the game, but my excitement clouded that out. Then came the sneak attack.

Once he was in bed, I did watch the rest of the game and was happy our team won.

But I didn’t enjoy it because I was thinking about how much I miss Steve.