Society and caregiving


It is isolating, and one of the biggest things that people say when they join the Well Spouse Association is “I felt so alone.” And that’s one of our, one of the slogans of the association: “You are not alone.” Because you cannot talk easily about what’s going on. I joined a choir and I’m glad that I did that, a community choir, and I was in that choir for 20 years in Fredericton, and people would, so many people would ask me, “How’s Vivienne? Is she feeling better?” And it’s always the idea, the model of illness for most people is acute illness, and then you get better— especially at our age as we started out at the age 30 with her having those symptoms and then on through our 40s and 50s. And in so many cases they just don’t say anything to the spouse, the well spouse. Some of our closest friends, they were good about that. But other people—and I had to develop a way to explain what was going on. Naively in the beginning, I thought “Well, when someone asks ‘how’s Vivienne?’ I’ll give them the clinical prognosis,” and I’d say “She had an obstruction the other day and the doctors say this and that about it. And this is what we have to do.” And then, I’m getting through about the 3rd or 4th sentence and their eyes glaze over and they look like the deer in the headlights look, and you realize it’s too much information. They want to hear that “Oh, she’s fine,” or “She’ll be better.” So I eventually, except with very close friends, of whom we had one or two, I just adopted a kind of general statement. I said—it’s like the curates egg— “She’s up and down.” Well, that’s a British expression.

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