What happens when things change for your family? You pivot

If you’ve been following along, you know that my wife Stephanie was diagnosed with Alzheimer’s. In an attempt to be transparent, we’ve talked about our experiences. I, then Kevin, and finally Stephanie (with my help) talked about it. If you’re interested or want a refresher, here are the links:

Our family has pivoted to life with Alzheimers, Life When Your Mom Has Alzheimer, and My wife talks about her life with Alzheimers

They say that the past is the best predictor of the future. I suppose. The sun has always risen, and it’s safe to say that it will tomorrow. I have coffee every morning. It’s safe to say that I will tomorrow. Life is simple when you base your future choices on what worked in the past. After all, “If it’s not broken, why fix it.” Or “don’t reinvent the wheel.” 

But what do you do when you have no past experiences to draw from? My only sister died in 2023, and she was going to take care of my parents in their old age. So, they moved to Northern CA to be near my brother and me. And then my dad died, and a couple months later Stephanie was diagnosed with Alzheimer’s. My brother and sister-in-law (who fortunately live walking distance from my mom) took over helping her, while Kevin and I focused on caring for Stephanie. We have no past to depend on. It’s just day-by-day, moment-by-moment.

What to do

If you know me personally or professionally, you know that my favorite word is pivot. Many experts focus on “kindness” and “empathy” as the most important lessons to teach our kids. Sure, but kindness and empathy don’t cut it when the shit hits the fan and your plans fall apart. Teaching our kids to pivot (and be resilient, another favorite principle) is essential.

Sure, Kevin and I are kind and empathic. They are a necessary part of helping Stephanie feel safe and secure. But when we don’t know how well Stephanie is doing when she wakes up, we need to be prepared to pivot.

Yesterday, I woke up before Stephanie, and I was feeling down. If you’ve read my recent blogs, you know that she started Namenda, an add-on drug for Alzheimer’s. It has been magical in how much her life functioning has improved. Yesterday, I noticed that it hasn’t been as helpful over the last couple of days. And I just felt sad and demoralized this a.m. I wasn’t sure if I was going to be able to pivot gracefully.

Turning it around

As Kevin left for school he said, “I’ve just left you alone this morning.” Apparently, he could tell I wasn’t doing very well. I took this as a reminder that I needed to up my game and be prepared to pivot. I put on the Grateful Dead, followed by a Dave Matthews’ double album, and did a deep cleaning of the kitchen. I focused on the good things in our life. The sunflowers I bought yesterday. The Dodgers winning the World Series. The delicious batch of cold brew coffee I made. I went outside and appreciated the sunny day. And I remembered Kevin’s comment yesterday. Paraphrasing, he came out of his room and said something along the lines of, “Now that we’ve got the World Series out of the way, we can become a Lakers house again.” (My son got a love of the SF Giants from Stephanie and the Lakers from me.) The Lakers are on tv at 730. 

Stephanie woke up a few minutes later, and I was ready to pivot as needed and be the husband I want to be. She and I danced a little, and I made her laugh with some silliness. I made tea and breakfast. She and I made lunch together. And she did most of the dishes. We left for the day.

Let’s reflect

I thought a bunch during the day. I remembered that she is still titrating up on Namenda, she was only halfway to her final dose. So, dipping back is ok. She went to her program, and when I picked her up, she’d had a very good day. She said she’d go seven days a week if she could. Her mind was clearer, and she was much more articulate. We went home, grazed, enjoyed an unexpected Lakers victory, started (re)watching Ted Lasso. Overnight, a new album (Tom Petty’s Greatest Hits) was delivered. Hopefully, it’s going to be a good day.

A few more thoughts

Editing this post, I realized something. When I’m home, I am always on high alert  for Stephanie. I just heard her wake up, and I’m on edge, ready to pivot. And this is important.

But at the same time, I need to exist in my house, and focus on other things. I can’t live on high alert. It’s just too much.  Stephanie will have Alzheimer’s for the rest of her life. I need to pace myself, or I’ll burn out.

And a few more thoughts

As I recognized the need to focus on more than how Stephanie is doing, I turned off my endless “to-do” list. Almost immediately, I felt sadness. My life, our life isn’t what we signed up for. But it’s what we do as committed partners, parents and people of character who try to be the best we can be for each other and for others. I felt compelled to talk about my feelings with Stephanie. It was a hard moment. She started crying and said, “This is so hard. I’m not going to see Kevin get married. He’s such a good boy.” Gut punch….
But as Dave Matthews sings in Jimi Thing, “What I want is what I’ve not got. But what I need is all around me.” As a man of character who loves his wife, it’s not even a question…After all, we don’t know what the future holds for our family.

You’re being a bummer