Day: 25 April 2022

Why I hate the C-word: Caregiver

Last week The Banker and I were enjoying Martini Monday, catching each other up on our respective work days when he casually recounted a conversation he’d had with one of his banking bros in which he referred to himself as my caregiver, and let’s just say it’s a good thing I had a bit of a buzz on.

Until last week, the C-word is not a word I had ever heard The Banker say. At least not as it pertains to me. And I was not impressed. Not impressed at all.

The Banker and I have a list of ‘Things You Can’t Say’ in our home. Okay, it’s more like I have a list of things he can’t say. It includes intrusive questions like, “How did you sleep?” (I didn’t), “What time do you want to get up?” (I do not get up at “times”), and “Do you want me to add Miss Vickies to the grocery list?” (don’t make me say it, the answer is always yes). We haven’t had the don’t say the C-word convo because until last week, I didn’t think we needed to.

I hate the word caregiver.

Before I tell you why I hate the C-word (and apologies to C-word seekers who were driven here by the SEO looking for something completely different), let’s just clear up exactly what a ‘caregiver’ is. While urbandictionary is my go-to resource for unsavory word definitions, none of their interpretations are appropriate for even this mouthy blog (tho they do have a spicy perspective on the caregiving role). Merriam-Webster, however, defines a caregiver as, “a person who provides direct care (as for children, elderly people, or the chronically ill).” Merriam-Webster goes on to explain that, “the care of a patient with Alzheimer’s Disease or a related disorder can be a physical, emotional and financial drain on the family caregiver.”

And here’s the first hint at why I hate the C-word. According to shitty Merriam-Webster, being a burden is baked into the very definition of ‘caregiver’.

With the right lawyer, The Banker might actually be able to claim the moniker ‘caregiver’. I do have a chronic illness, and I guess ‘direct care’ could include things like helping me into this Shrek boot at bedtime.

But caring exists on a spectrum, especially when it comes to a disease as variable as MS. The Banker does all the dishes, every dog-walk, and all the driving. I don’t want to diminish how much he cares for me, but is this enough caring for him to qualify as a capital C Caregiver? Because, when it comes to managing my MS, it takes a village of medical professionals and social supports; and while I appreciate that TB puts the rollator in the trunk of the car 100% of the time, I feed and dress myself, I manage my appointments, and make all my own medical decisions. I make all my own every decisions. Yes, he does a lot for me, but it’s worth reminding myself that:

the person who is responsible for the overwhelming majority of my MS care is me.

Am I being extra? Sure. You know my brand. But words matter, and the language we use impacts how we feel. Maybe I’m reactive to the C-word because most of the time I’m trying hard not to feel like the B-word, burden. (And if you need a reminder on the MS F-word, click here.)

Yeah, but isn’t a rose by any other name still a caregiver?  

I don’t introduce The Banker as my lover, because it’s not the 70s and ‘lover’ is a gross word. More than that, our sex-life is part of our relationship but it isn’t what defines it. Even the term ‘husband’ has evolved since the 1950’s. The Banker is my partner, even if I need him to get the chips off the high shelf and fold all my sweaters. How can we feel like equals if we label ourselves by anything else? Using the word ‘caregiver’ would define our relationship by MS, and make MS the Most Important Thing. I feel best about the role MS plays in our marriage when I think of us handling it as we would any crisis: as a team.

And anyway, using the C-word is bad for both of us. There’s a helplessness, and a parent/child dynamic that’s associated with this term. It creates an unsexy vibe (unless you’re into that, in which case, I refer you back to urbandictionary). What’s more, ‘caregivers’ can become overwhelmed with an exaggerated sense of responsibility. Yes, life is easier when The Banker mixes my martinis or preps my two-a-day hot water bottle habit, but I like to remind him of the Trippers I know who have more advanced MS than me, and are nonetheless living and thriving without the benefit of an unpaid caregiver. I stress this because I need TB to know—I need us both to know—that I am here in this relationship because I choose to be, not because I have to be.

So, is there ever a time when you can use the C-word? 

Before I finished my cocktail, The Banker backed up his claim to martyrdom by giving me the full context of his foul language. He had been trying to communicate his limited risk-tolerance for Covid exposure, explaining that he is the “caregiver of someone who is high-risk.” My lawyer would argue that he could have just said, “My wife is high-risk.” After all, parents, partners, and friends are already relationships that include an element of caring, of keeping safe. But I decided to let it slide. It was his first offense and it’s worth considering that, ‘caregiver’ and ‘high-risk’ are words we’ve commonly heard in the same breath over the past couple of years. Plus, he didn’t object. He understood how the word sounded in my ear and that my lawyer is a better lawyer than his lawyer.

Rejecting the label of caregiver doesn’t mean a rejection of care. My beef is with feeling diminished by how the term puts the balance of caring squarely on one side of the relationship; dismissing whatever care I provide, making me sound like a dependent. I concede that there may come a tipping point when, someday, I need considerably more care. But using the term ‘caregiver’ before we’re even close to that point feels like a rush toward a dynamic neither of us wants. 

So, if I can’t say the C-word, wtf can I say?

The people in our lives who love and care for us don’t always seek or know where to find their own support. In this case, the term caregiver can be helpful in identifying resources and connections with others who can relate. And, if using the term caregiver will net you a sweet tax break, then sure. Cut me in on the deal, just do it when I’m not around, so I don’t have to hear you say the C-word out loud.

And obviously, you do you. If the caregiver label helps you feel cared for, or if someone in your life needs the acknowledgement or recognition the word confers and you’re cool with that, you don’t need to listen to me. These are the details that get negotiated in relationships and it’s none of my beeswax how you define yours.

This rant is for anyone who feels icky about the idea of their spouse as a caregiver, but maybe isn’t sure why, or how to articulate their discomfort. This rant is the half-truth I need to tell myself so that I can still feel like me, when year after year I need more and more care. This rant is the reminder that I’m still in the game. I need you on my team. But, I’m still the captain.

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