I haven’t been able to ask the question in this title of this post without bursting into song since 1986. That’s when a friend shared his bootleg recording of the London cast soundtrack of Les Miserables and I first fell in love with that story of identity, redemption, and devotion to the things we believe in.
I’m a little embarrassed to admit that even now, nearly 40 years later, I’ve actually never read the Victor Hugo novel. (C’est la vie.) But I have spent a lot of time pondering that question in the years since Mike’s diagnosis.
There’s a part of me that is exactly the same person I’ve been since 1988: Mike’s wife. But I’ve lost the part of me that was Mike’s partner, since partnership presumes the presence of two people. Mike is still physically present, but he doesn’t share my life anymore. Most of the things I want or need to do are things he can no longer do with me—or discuss, for that matter. He can’t even share them vicariously.
This is a situation I’m still trying to adapt to, but it doesn’t alter my identity status at all. Last week, for instance, after I got Mike situated at his dementia care program—calming the Monday morning confusion over this change in our routine, since Friday was literally days ago—the program director smiled at me and patted my shoulder as I walked out the door, leaving him behind for the day.
“You’re a very nice wife,” she said.
I smiled and thanked her. “I try to be,” I said.
“You are,” she assured me. “And God bless you for that.”
There are certainly moments when I don’t feel like a very nice wife—moments when I lose my temper and speak sharply (or catch myself just before the words slip out), then walk away and take a deep breath before coming back and trying to do better.
Living with a person in the advanced stages of dementia is really hard. Speaking to someone who doesn’t understand most of what you’re saying—who doesn’t understand what table means, or blue, or turn around—is really frustrating. These things are simply true.
So, yeah. I lose my cool now and then. Patience is a finite resource. These things are also simply true.
It’s difficult to know how much Mike understands about what’s happening around him on any given day, but I can tell he knows when I’m nearing the end of my rope. I can also tell that this upsets him. I do my level best to keep those moments to a minimum. If that means I can’t be around him for a minute—well, so be it.
Imagine how terrifying it must be to live in world that makes no sense to you, then realize you’ve made someone angry and have no idea what you can do to fix the problem. It sounds like living in a country where you don’t speak the language or understand the local customs.
It also sounds like childhood. And what a terrifying prospect, being sent back there again.
This may be the hardest adjustment I’ve made on the dementia care journey (so far): admitting to myself that, after nearly 37 years of marriage, walking away from my husband is often the kindest thing I can do for him.
Because who am I, if not Mike’s very nice wife? Not half of MikeandPam, all one word, the nucleus of our delightful little family? Not his power of attorney, not the co-owner of all our assets?
During my recent writing residency at Hedgebrook, I had a moment that brought me an answer to that question—a moment when I was reminded that there’s more to me than being a co-person. But then I came home and, once again immersed in the daily reality of someone’s dependence, I forgot all about it.
Forgetting something doesn’t mean it stops being true, though. Ask anyone who’s tried to employ that “stick your head in the sand” strategy for dealing with a problem.
Who am I? The question waits patiently for an answer.
Not the person I thought I’d be at 61, that’s for sure. I would never have imagined this life for myself. But maybe the simple answer is that I’m whatever person I choose to be in the moments that require making a choice.
The person who chooses to come back again, every time she walks away.
A lovely illustration of how life can be both heartbreaking and heart opening all at once. Thanks for sharing.
This is so beautiful, Pam and it resonates so deeply for me personally. Thank you for sharing it, and for being so honest and vulnerable. I know it's not easy. Your writing is a gift to others who are walking this path, as well.