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Agency

Tuesday, May 1st, 2018

When Dorothy Salisbury Davis turned eighty, I flew to New York for her birthday. She wasn’t feeling well, and during the three days I spent with her she finally admitted to some bleeding and a low-grade fever. I urged her to let me take her to her doctor but she was adamantly opposed. In retrospect, I suppose she was afraid of hospitalization instead of the festive dinner she’d been planning. At any rate, I respected her wishes, we had dinner. The next day I urged her again, but she remained resolute — or perhaps obdurate, and I returned to Chicago.

Two days later a good friend found her passed out on her living room floor. She was rushed to an ER where they diagnosed a kidney infection, eminently treatable. She was resilient as well as obdurate and was soon back in top form.

Dorothy lived to 98 in pretty good health except for her last few years, but the question of when she needed care and what kind continued to be a struggle. The friend who got her to the ER was also resolute and pushed Dorothy far harder than I ever could have or would have.

I’ve been thinking about that recently, thinking about agency. My husband has COPD and it is worsening. He doesn’t want to go to a pulmonologist; he doesn’t want oxygen. I think I have a right to insist he uses his inhalers, but I think he has a right to decide how much additional treatment he wants.

I’m torn on this question of agency. If he were younger, if he were as mentally sharp as he was at 75 (he’s 94 now), maybe he’d make the decision to go to oxygen or other treatments, but he might not. He needs me to administer any therapies he receives and he has never liked being dependent. He’s always been the caregiver, not the care receiver, and I imagine myself in his head, thinking, “I won’t be that helpless person.”

I was in my twenties when a beloved friend succombed to a particularly lethal form of lupus; I was with her when she died. The night before, she pulled all the treatment lines out of her body. She’d had enough in her twenty-five short years. When I was 25, I couldn’t bear the decision she made but I understand it better now — I was clinging to her in my own neediness, not letting her go where she needed to be.  As Stewart Alsop put it so poignantly, A dying person needs to die just as a sleepy person needs to sleep, and there comes a time when it is wrong to resist.

 

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