I don’t believe many of us who marry and say the words, “for better or worse,” truly know what we’re getting into. I don’t believe many of us stick around after the better ends, be it thirty days or thirty years. And I can “guaran-darn-tee” you (my daddy’s saying), that most of us don’t know how to approach an adult and say, “It’s time you start wearing diapers.”
We can hardly bring ourselves to tell someone they have food in their teeth, or a humdinger in their nose. Yet here I sit at a coffee shop, chai teas and cappuccinos wafting the air, after a night of being screamed from sleep and dashing to a bathroom that resembled more a cattle stall.
In no way am I demeaning those who lose their body functions. I’ve been surrounded by sick and declining loved ones for a decade plus. I’m nearing the time to become one. If you are one who’s already there, my heart goes out to you. The humiliation is great. I am sorry for this. You didn’t choose this, but here it is.
Flipside is the resistance. I’ve yet to encounter one of my loved ones who’s willing to accept a change in physical aid. Whether it’s a health-care worker helping with their bathing or arranging their meds or suggesting an upgrade to a cane, or walker, or chair, none of them went quietly. Part of me wants to know why? But I’m not the one being asked to surrender my keys and be driven where I need to go.
So how do we do this? My loved one has traveled the world, gone places we question whether any other American has gone before, juggled a whole CAD drawing in his head, only to wake knowing the design was catastrophically off by a quarter inch. Now he asks me the same questions over and over, becomes mad when he hallucinates, and struggles to recall his children’s names at times.
How do we speak to a mind that doesn’t remember? No, that’s not quite right. How do we speak to a mind that grasps that it knows, but can’t reach the words? How do we suggest diapers to a person who is used to being in control and in command?
I don’t want to do this; but it’s up to me. Last night, on the way to the war zone, after grabbing trash bags, paper towels and Clorox bleach, I uttered a ‘please help’ prayer. Please help me handle this rightly, with integrity and respect for my loved one. After all, I have my own stuff. My own baggage with him that should have been cleaned up years ago, but wasn’t. Still, I didn’t need to add to the sad, overwhelming aroma signaling he’s that much closer to whatever comes next.
Because that’s what disease brings. A knowing unknown. We all have an endgame. We just don’t know how. But I can track my response. How am I handling this? How am I progressing? Sometimes, an ugly sense of self-righteousness rises up in me when I apologize, but I shake it off because at least I tried: the excuse. Other voices swell up as well: the doormat, the martyr or the overachiever. I’ve struggled against these voices inside of me to lash out at his anger and show frustration at the uncontrollable bowels.
I’d like to say identifying this is a step forward. I have absolutely no clue whether that’s true or not. However, how we each handle these situations with our loved ones is a choice. I choose to stick it out. I choose to fight for the next right thing. I choose Jesus as my help, no matter my feelings. I certainly didn’t feel Him with me as I gagged, after helping my husband upstairs. But there’s no way I could break out in song at 2 am declaring “How Great is Our God” without something bigger than a spray bottle.
Even so, I wish for a fairy tale. My loved one would take my hand and say, “Yes, I want to do whatever makes this easier on you.” But his brain has quit thinking of that, as minds sometimes do when struggling with disease. No, fairy tale here—this is apocalyptic. I know what’s coming and there’s not much I can do to stop it. I can clean the cattle stall to pristine, but the events of illness aren’t stopping. I will say the word ‘diapers’ to my fully grown loved one, who will hate me for it. Perhaps somewhere in the saying, the clambering for light and life, the war for love will rise up, like a green shoot from a downed tree. I can only hope.