First We Got Engaged. Then I Became My Husband’s Caregiver

But every surgery is different, and the more often you cut into the same place, the worse the outcome will be. During his third surgery he suffered a stroke, leaving him partially paralyzed on his left side. He spent a month in the hospital, then months more in rehab. For the first time my husband found himself unable to bounce back quickly to work, and over the first few months at home, sank into a depressive state typical of right-side stroke survivors. When my kids asked me, “Will Daddy die?” I breathed through panic attacks, my voice a practiced calm. “He’s going to get through this,” I told them.

So I took care of them. All of them. I often found myself shuttling between fifteen doctor’s appointments a week. My honorary titles—Caregiver, Wife of the Man with Brain Cancer, Super Mom—landed on me with enough heft to crush me. Caregiver Stress is a recognized condition, with symptoms nearly identical to those of PTSD. The greatest differences are that caregiver stress is viewed as the purview of middle-aged women caring for aging parents, and that it has a defined and tragic end. Having outlived all the statistical data regarding his cancer, there is no expectation that my husband will die any time soon, and with our children rapidly approaching their teen years, the likelihood of ever greater emotional tolls upon me, their primary caregiver, only increases.

Between the caregiver stress, the PTSD, and the fact that my husband has brain cancer, I felt my foundations breaking. I was the primary source of comfort, organization, structure and emotional support for everyone but myself. Prioritizing myself seemed like the epitome of selfishness—I was there to care for my husband and my children whose needs were greater than my own. My role was set. My identity has been formed and reformed around the needs of those around me and the pathological need to put myself last.

Finally, I sought therapy and began trying to learn to live with the fear I had denied for a decade. When I found my therapist and told her I was suffering renewed symptoms of my PTSD, it had not occurred to me that I was going through anything new. I had completely convinced myself of my husband’s invulnerability to his disease, but my therapist slowly peeled back the bandages I had slapped over these traumas, and showed me how raw I was underneath. With her help, I started to see in myself the unhealthy belief structure I had built up around my husband’s survival. I had placed a life-or-death necessity on self-abnegation, I had convinced myself that if I permitted myself even a moment of doubt or fear, he would die. In my mind, my dedication to denial was the magic spell pushing his success.

Of course, none of that was true. While a positive attitude is always helpful, the fact of his illness was not my burden to bear. Through learning that I began the process of understanding the need to care for myself, and then I began learning to listen to my own emotions, to give myself space to feel what I’m feeling. I’ve learned I’m a better caregiver when I am not trying to solve every problem. Once I was able to express my fears to my husband, he was able for the first time to talk about his fears of recurrence with me. Being able to be vulnerable, to be partners in the stress of our lives, has made our marriage stronger. It has made me a more honest mother, honest about my flaws and my limitations, and it has made me a more compassionate friend.

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