Codeword: Love

Mar

Codeword: Love

Mar
heart-864113_1280This week, I had a couple of days with more crying than usual. I have learned, for me, crying about unimportant stuff is a sign that something larger is troubling me. When I found myself with tears streaming down my face over a couple of small "slights" from my husband (read: not paying attention), I had to go deeper to find out what was amiss.

Crying is a subject for another blog, I hope. But for now, I'll say I not only feel better after a cry, but I see better and think more clearly. It's like trying to see through a dusty window, and then the tears wash the window clean, clear and bright--and I can see my intention, my core values, and sometimes a nugget of clarity or wisdom.

What had happened was a couple of incidents where Tom completely ignored my saying "I have an idea ..." or "stop what you're doing please, and listen." I took it personally. I was sure it was intentional. I know better, his illness makes it really difficult for him to switch from one idea or process to another. So why the tears streaming down my face? Was I overtired? Overwhelmed? Probably. Likely. We're in the process of purchasing a home in another state to make a gradual transition to be closer to one of our children, and the details of all that are all mine. But I had been doing fine with all that.

This was something else. What was troubling me so much about him ignoring my voice?

We are early in our journey with this illness (fronto temporal degeneration) but there have already been some incidents where I needed him to listen urgently. "Take the pan off the stove.  Move the pan off the burner.  It's smoking.  Just take it off the burner, Sweetie," as I walk quickly to do it myself.

This morning, with tears streaming down my face, I was finally able to get the words out. "I don't know what to do." "What do you mean?" Tom asked. Me: "I know these things aren't that important. Please stop peppering my eggs. It's not the end of the world. We can make more. But... There are times when stopping and hearing my voice is very important. I need you to listen to me, and to trust my voice."

And then the truth, the core came. Choking on my tears, I said, "I need you to know that when you hear my voice, it is the safest and most trustworthy voice you can hear. I need you to trust my voice more than your own." Whoa. There it is.

How difficult is that? It's nearly impossible. How would that be for any of us? We are used to "believing our own voice," believing our ideas are rational and make sense (and perhaps bordering on genius.) What must it be like to need to distrust our own voice and ideas and to trust another's voice and ideas completely? That is what Tom must do, as his illness affects judgment and reasoning. That is the challenge of anyone with a cognitive decline--to shift into believing trustworthy people more than they believe themselves. It's why, I believe, we see people have a "cantankerous" stage when they fight hard to be believed and heard, when they demand we listen to them, and why the pushback is so strong. There is so much at stake.

It's been an adjustment for me as well. I am used to trusting that Tom knows how to do things, how to evaluate a decision, even how to navigate to an unfamiliar place. I have had to make a shift to realize his decisions and even his previously amazing sense of direction is no longer trustworthy all the time.

My heart breaks for him in that. It breaks for us too. But, I am also grateful that I do want what is best for him, and that my voice is actually trustworthy.

So what to do? How to change direction and dynamic after 37 years of marriage?

I threw out an idea. It's something that would be useful at times with children as well. I said, "Do you think we should have a code word? A word that, when I say it, you stop what you're doing, make eye contact with me, and really hear me? And try to believe that you can trust my voice more than your own thought?"

He's such a great guy. His response was, "Sure, let's try that."

"OK, what do you think the code word should be?" I was thinking, what would I not mind saying as he walks away in a grocery store, as he starts to do something dangerous, etc. What would be a secret signal but appropriate in all settings as well?

"How about LOVE?"

"Huh?"

"How about LOVE? Do you think that would work?"

He turns away, back to peppering the eggs. Okay, time to try it. "Tom... LOVE." He turns around. He makes eye contact. He smiles.

"Ready to hear what I have to say?"

"Sure."

"I can't eat those eggs with all that pepper. Can we throw them away and make new ones?"

"Sure."

Only time will tell whether "codeword LOVE" is just an idea or something bordering on genius.

I'm hoping for genius.