I was angry that Maggie didn’t fight back against the tightening of that circle. I confronted her when she refused to take her pills, when I found napkins full of them stuffed behind the recliner seat cushion or hidden in piles of her clothing, when she wouldn’t go for a walk to get a bit of exercise, when I found pieces of candy stashed in hiding places she probably forgot about, when she came home from a dinner so drunk she could barely stand.
Why did you…? How could you…? Don’t you understand that…? The doctor told you… I don’t know what I’m supposed to do…
I made myself the victim or, sometimes, I’d even turn her love of her grandchildren into guilt.
Don’t you want to see your grandchildren grow up?
During my exasperated, frustrated rants, she didn’t say a word and glanced at me only occasionally. Even when I told her over and over that I loved her — even when I pleaded with her — she remained silent. If, after I was all ranted out, I knelt next to the recliner, held her, and said, “I love you,” then she would reply, “I love you, too.”
What does “fight back” mean when you’re saddled with an incurable disease whose cause is unknown and whose progression can only be “managed”? Maggie was not going to get better — at best, she would not get worse. I wanted her with me, whatever her condition. Maybe “whatever her condition” was not a quality of life she wanted for herself. Did I, who was not ill, have the right to demand that she fight back? By doing so, was I claiming that I would have fought back if I were in the recliner, in effect telling her that I was better than her? And, perhaps most important of all, by making her feel guilty about not doing more to take care of herself, was I reinforcing in her mind just how much independence she had lost? Maybe not taking her pills was her way of asserting what little independence she had left. Maybe hiding candy was her way of squeezing little bits of pleasure from a life that seemed less and less her own.
I justified my pressure on Maggie by telling myself that her neurosarcoidosis affected her decision-making ability. That was true. But was it entirely true? Maggie made plenty of decisions that seemed reasonable: She decided she wanted to go to the dollar store; she decided she wanted café con leche y tostada every morning; she decided to call her sister to chat. If it was not entirely true, how true was it? Was it true only for decisions she made that I disagreed with? If so, then my justification was an excuse for my frustration.
I didn’t know where to draw the line, or whether a line could be drawn. I tried not to be so much of a helicopter husband. You can’t help someone who doesn’t want to be helped, I told myself. This is true. but also cruel. Maggie wasn’t a passerby who didn’t want my help picking up keys she had dropped. She was the love of my life. We were together — willingly — for 36 years. We had zinged (see “Hotel Transylvania”).
All of these questions disappeared — temporarily — when Maggie had a stroke on Saturday, Aug. 24, 2019. I was on the couch in the living room. I walked toward the bedroom and called “Good morning” to her. She didn’t respond, which was odd. I walked into the bedroom. She was sitting in the recliner. I looked at her and knew what had happened: Her eyes were wide, her speech was unintelligible, and her movements were uncoordinated. The stroke must have occurred just as she was putting her leg in her pants because she was stuck in that position. My reaction probably caused her anxiety; I don’t think she was aware of what was happening to her until she saw my face. She still had some consciousness when the EMTs arrived because she saw them and made a crying sound. By the time the EMTs got her in the ambulance, she was unconscious.
