My Partner Is Not My Caregiver
In cancer terminology, there is a lot of very loaded language. Terms like "survivor" have become so ingrained that patients even worry about when it is okay to use the term for themselves -- and some of us debate whether it is even a term that should be used at all.
The power of words
Words define our experiences in many ways, shaping how we express our condition, defining how we are understood by others. Words impact our treatments, our options, the very nature of our existence. And they can have a profound effect on those close to us, language subtly shifting the dynamics in a relationship. This is why, in our household, we use neither the term "survivor" nor the term "caregiver." I even avoid referring to myself as a patient unless I am directly addressing my relationship with my doctor. Instead, we speak of ourselves as "partners" in this ordeal of cancer treatment.
Not relating to cancer labels
To both of us, the term "caregiver" always conjured images of a bedside nurse tending to an invalid. Or it makes us feel chained together, perhaps out of societal duty, in a way that makes one feel in servitude to the other. I realize that for many people, being a caregiver may mean something else entirely; it may even feel like a term of endearment, I imagine, or it may be worn as a proud badge. But my point is that these labels do not universally fit, and using them as though they did is potentially hurtful.
If we defined ourselves as Survivor and Caregiver, there is an immediate dynamic set up that raises the status of one while potentially diminishing the status of the other. There is an ingrained stigma that evolves, as well; caregivers, in general, have very difficult jobs that frequently lack the support offered to survivors. They are not offered the Purple Hearts that Survivors metaphorically brandish, though their emotional endurance may be forced to exceed that of their more physically suffering counterparts. And they are expected to remain steadfast throughout, frowned upon if they complain or wish for a life like the one they had before the cancer.
When a Caregiver wants to get away from the Survivor, it is selfish. Society does not like a person who turns away from the brave and noble Survivor, never mind that the Caregiver has likely been hammered into the ground by the heavy blows of constant stress, sleep deprivation, dramatically increased workload and household responsibilities, and quite probably having to deal with the erratic mood swings of the Survivor throughout changing treatment protocols. And then there is the Caregiver overcome with sadness, unable to handle the burden of watching a loved-one struggle.
Our always shifting roles
This is not to diminish the situations that we sometimes find ourselves in through the machinations of fate. Sudden shifts occur in all our lives that reframe how we exist, forcing roles upon us that perhaps we never envisioned possible. Sometimes we rise to new heights, sometimes we feel trapped.
While some couples may settle comfortably into the roles of caregiver and patient, it is not a dynamic suited for every relationship. I would have no trouble being the caregiver to my child, for instance, because it is a natural progression of our existing relationship. And I would have no problem hiring a caregiver for myself if the need arose and I had the financial ability to do so. But in my personal relationship, I have always felt that we functioned best as partners. Certainly, we cannot always be on equal footing, but we recognize that it is a shifting paradigm, one in which we must try to care for each other, regardless.
Support from my partner
I may be a patient, but being a patient does not define me in terms of my relationship. And there may be times when I require care, where I cannot make my own meals or tend to any household duties or even get out of the bed -- but until I am calling in hospice and preparing for my final days, I want someone who is focused on propping me up the same way that I will focus on propping up my partner. This is all about teamwork, and for us, this kind of team works best with equal footing.
Editor’s Note: We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.
Are you raising children during your lung cancer journey?