There’s a reason it’s called caregiving. It isn’t called care-loaning or even care-working. There may be some hope for reciprocation should the table someday be turned, or even an implicit understanding that the person to whom one is giving care would do the same if need be. But that thought rarely enters into the act of caregiving. It even seems a misnomer to say that one provides caregiving “for a living” as though the act of payment is ever sufficient for the effort that is put forward; at least the part of the effort that involves emotions, selflessness, and true connection with another. 

No, the act of caregiving is indeed a gift of care. You put it out there, you hope that it is more than adequate, and you try to gain comfort from the honor of it.

The role of caregiver was not one to which I naturally took. I do not have the patience, fortitude, or confidence. In thinking back on Kevin’s illness, it is perhaps my greatest regret that I didn’t do a better job as his caregiver. It was all such difficult terrain to maneuver. Taking fully to the role also meant admitting and accepting that he was in need of such care from those around him, a level of vulnerability that hurt and frustrated him greatly. So I think we both danced around the issue when it would have been best to have an open discussion about it.

On our wedding anniversary, spent in the hospital, we tried desperately to ignore the setting, the bustle, the constant intrusions, the stark-white-tiled-reality, and have what we both tacitly understood could very well be our last anniversary together. We ordered our favorite dinner carry-out from Amadeus, a place we would traditionally have lingered in on that day, enjoying smoked salmon over crisp potato pancakes, and sweet Napoleons (for Kevin) with strong coffee (for me), sitting at a nicely set table in the restaurant’s lovely, cramped space. 

Instead, I sneaked a bottle of wine into his room, knowing that the combination of alcohol and drugs he was taking would most likely render our evening short.  The fluorescent lights were dimmed, leaving just a few narrow slats of sunlight to seep through the blinds. We sat together—a metal hospital table rolled up between us—and tried to imagine that the Styrofoam containers were fine china. By this time, Kevin was paralyzed from the neck down. I used one fork to eat both my dinner and feed him his—such a very small way in which to join us together.

We finished dinner, watched most of a movie, but then had to let the nurses and aides enter the room for nighttime prep. We had been discussing options for going forward with the doctors and social workers. Mobility wasn’t returning and the harder he worked with his OT and PT staff, the more frequently he developed infections that erased any progress. Coming home to Kevin in many ways meant giving up and it was so very hard for him to do that. The nurse that night seemed not to care that it was our anniversary. In addition to repeatedly entering the room, she also wanted to spend the nighttime prep instructing me on how to do those tasks I would be handling once home. 

I still remember looking at her face—a middle-aged, take-charge blond, with deep blue eyes and little makeup. She wore navy blue scrubs and carried a plastic box with Kevin’s meds. I conducted a two-minute internal debate and then refused her offer of instruction. “Tonight is our anniversary, and for this day, I am just his wife. I’ll be back in a few minutes.” I kissed Kevin’s forehead and left the room feeling many, many emotions: anger, frustration, regret, guilt, love, fear, pain.

It was truly my great honor to care for Kevin in the last months of his life. And I will never be able to repay those others that helped care for him, especially his mother, brothers and sisters, who did as much as I ever did, coming every day and staying for days at a time. But that one time, I just couldn’t do it. I couldn’t be party to the quaking shift that occurs in the tectonic plates of a relationship when such care is needed. We never talked about that night and I can only hope that he understood why I did what I did.

I have thought back on that moment frequently and still feel many of the emotions I felt then. I continue to reflect on caregiving and what it really means to a relationship, especially a marriage. After going through Kevin’s Stage IV treatment I knew that, even if by some miracle he beat the cancer and became healthy again, our marriage would forever be altered by the change of our roles and by the sheer amount of need that had settled in between us. To require such care, to need another person to that extent, forever manipulates a relationship’s dynamics, there’s just no way around it.

But certainly the caregiving didn’t begin with Kevin’s illness. It is always, to varying degrees, part of a relationship; it teeters and totters over time with one giving care to the other and the other reciprocating as needed or as able. Sometimes it’s care for physical needs, sometimes for emotional ones.  He cared for me after we had our children. I cared for him when he lost his job. We cared for each other during minor illnesses and set-backs. Because we married so young, we spent much time caring for each other as we grew up and became adults who learned to cope with loss, disappointment, and small failures. 

Now, as I think of moving on—of the possibility of dating or starting a new relationship—this idea of caregiving pops into my head again. I feel almost as though I have been tattooed by my experience of caring for a dying partner. It has permanently changed me, my perspective, and my way of thinking. I feel not only transformed—both physically and emotionally—but also marked in certain ways as susceptible.

I wonder if I am equipped to enter the role of caregiver anew, even to the basic extent that it is required for a successful connection between two healthy people. I don’t know that I’ve exorcised the demons of regret and anger at cancer for putting us into that unbalanced position. Given the experience of the totality of my marriage—not just the time of Kevin’s illness—I know that caregiving is an essential part of two people living together. To be successful, both must enter into the idea of giving care to the other from time to time and understanding the generosity and selflessness that are required. I wonder if I have that level of generosity in me; if it, like other senses can blossom again, spurred perhaps by feelings of affection and attraction. 

And there are other issues too. Like the idea that perhaps I have come to need more than the usual amount of giving care in my life. I worry that I may seek out those who need extra emotional care because it, at least for a time, was such a part of my identity. I tell myself I need to be surrounded by healthy and well-adjusted, not  “projects,” and yet I find myself drawn to those in need, ready to swoop in and fix all that is troubling, whether or not I actually have the skill or capacity to do so.

Even harder for me is the idea of receiving care. I was recently joking with friends about the possibility of going on a date with a particular person. One friend suggested that I should do it; that this man had the personality and wherewithal to wine and dine me, and that perhaps that’s exactly what I need right now: someone to care for me for a while. But even this doesn’t feel right. Having had the experience of being the caregiver has also made me overly cautious of being on the receiving end. Though spending an evening at a really good restaurant drinking a very nice wine hardly puts me into a place of being “cared for”, my hyper-analytical (read: overthinking) state of mind (as well as my feminist leanings) does cause me to go there. 

I often see even the slightest imbalance as significant.

I suppose it is balance that I should be seeking and that I should hope will find me. I shouldn’t worry about how messy or neat someone’s life is, but rather that there will be gratitude and reciprocation of whatever help I extend. And I shouldn’t fret over whether an act of kindness or even tenderness might throw off the equilibrium, but rather enjoy it with gratitude. Relationships are, after all, teeter-totters of care and many other things too. I’m sitting now with my butt on the ground, staring at the vacancy on the other end, and closing my eyes as I consider pushing off.