I noticed the oddity in the phenomenon before I realized its destructive nature. And while I wouldn't say the majority of caregivers I've met behave in this way, it only takes one or two jabs from a single source to send repercussive poisonous ripples into the sea of surrounding caregivers. The remarks are offhanded and subtly dismissive.
When I explain that I'm showering my husband every other day:
Oh really? I shower [survivor's name] every day. And if he decides he doesn't like the first outfit I dress him in I change him into whatever he wants. But isn't that what we should do for them? You know, since they've lost so much. Give them control that they can have.
When I explain I'm nearing caregiver burnout when I bow out of conversation:
You mean, just exhausted like the rest of us?
When I try to relate my experiences with the caregiver of a spinal cord injury patient:
You wouldn't know what it's like. You're only dealing with stroke.
When I explain that I need quiet time while Mr. PNU is in therapy instead of socializing:
You were only up twice in the night? I'm up every two hours turning my quad every night.
In general conversation about caregiving:
I don't know how [insert name of absent caregiver] can complain about being tired. I mean, she has help come in a couple of times a week.
After Mr. PNU came home, I'd only engaged in a couple of these exchanges before I started self-evaluating and weighing that criticism against the job I was doing. How good was I at caregiving if I received in-home help? Was I tough enough if I wasn't having to do the kind of work that the caregiver of a quad must maintain? Were my struggles even valid if I am only dealing with stroke? Basically, I began beating myself up. I wondered. Why was caregiving so hard for me if I receive nine hours of respite help a week? If my husband had half the use of his body? If Medicaid pays for shower aides to help out three of the days I'm not showering my husband on my own? And it really shouldn't be that difficult, because one or two other caregivers regularly tell me how easy I've got it, right? So why was I falling apart so quickly?
I began taking stock of the caregiver community climate a few weeks ago. Most people I've encountered at therapy are totally supportive, regardless of the differences in our particular jobs. It isn't a predominantly competitive environment, but there exists a small handful of caregivers who seem delighted whenever they are given the chance to set themselves up as hardworking and kicking it better than everyone else.
And I fell for the bullshit.
There's a line I tell my kids over and over, a broken-record recitation—a "momtra".
IT'S NOT A CONTEST
I was raised by an excessively competitive woman. That fact has had long-reaching negative consequences, so this is a lesson I reteach myself as often as I try to drive it home with my crew. It doesn't matter what you know, or what you do—there will always be someone who knows more, or who does what you do with more skill, more experience, more accolade. And you know what I think about that? So what? There will always be someone on some particular day, no matter how well you've packaged yourself, who will win at the beauty charade, who will beat you to the right answer, who is willing to laugh at your expense in order to feel more worthy. But to what end?
The only role in life worth competing for is the title for kindness. Not feigned hospitality or contrived niceties—true charity. A soft tone. A listening, compassionate ear. A supportive response. Patient encouragement. Withheld reproof. Tender humility and forgiveness. A willing smile. A genuine outpouring of helping desire. Accomplishments and accolades are lovely, but for what if they are won at the expense of our intimates relationship with our fellow humankind?
I think my family hears the wisdom in the words, even though I find reason to continue repeating myself. And so, as I began to unravel a couple of weeks ago, I had to re-evaluate what I'd let become a contest.
Am I tough enough? Yes. But my husband doesn't need tough. He needs a kind, supportive, happy, loving wife. That's what matters most to him.
Is there any such thing as just stroke? Spinal cord injury leaves personality and mental capacity intact. While the injury is certain to cause depression, the person—though differently abled and greatly changed physically— really is the same person. It's so funny how we can look at other awful situations and feel jealousy for what ability remains and think we'd exchange our lot for another's. Some days, when I've pushed a 230 lb. man in a manual wheelchair for hours on end, I'd give anything to trade for quad paralysis since so many of the C4s and C5s I meet can operate their own motorized chairs. I don't think my husband would agree. There's no such thing as JUST anything. All hardship is valid. All hardship is hard. Humans struggle when life is hard. It's normal.
If I accept help, does that automatically preclude me from taking pride in the care I give my husband? At the end of this road, if I've cared for my husband with help and maintained the quality and closeness of our marriage, why would any healthy person question the job I've done? Managing survivor/caregiver conflict is a very real issue in the realm of longterm disability. I see the relationships of those around me shred by inescapable co-dependency, obliterating any true intimacy that existed prior to injury. I see caregivers staying with their survivors out of obligation as parents, spouses, and other family rather than willing service. I see the resentment the caregivers sometimes wear, and the returned resentment from survivors unable to escape their complete dependence on the relationship to survive. I hope in choosing to ask for help, and for accepting more and more of it, I can preserve the genuine love I have for my husband, and protect his ability to share his genuine love for me in the exchange. A happy marriage—being a happy wife—is by far the better alternative to winning some imaginary title of "World's-Hardest-Working-Toughest-Badass-Caregiver." Because as soon as comparisons start creeping in, even if I'm comparing myself to other caregivers and not my husband, the balance in this tightrope act is thrown.
We're struggling enough with balance as it is. So I let go. My imaginary opponent crumples to the ground, tied up in her own rope. I'm still standing, and as I walk away I remind myself again: It's not a contest. It never was.