About six weeks ago, my love and I got married. She has Huntington’s Disease, but with medication, physical therapy, and sheer determination, she is living with it, rather than dying of it. My mom says I should write a memoir about this, but we aren’t really that interested in it. Like anyone else who does self-maintenance in order to do the things we enjoy or have to do. Just now, we are working on the house she bought and owns, through a combination of hard work and family support. But inevitably, as the disease takes it toll, she is less able to do most of the physical work, both large and small. She no longer drives. Hence, the work falls onto me.
And I am grateful for the opportunity to do it. Vermont pays family caregivers like me to help their dependents stay out of residential or institutional care settings, on the assumption that this is cheaper than shelling out Medicaid at that level. They are probably right. This summer, thanks to our generous wedding guests and family, we are doing about two thousand dollars worth of work on said house, as well as heading for church camp next week. We pay property taxes, we buy organic food, we take care of stray cats. In the larger sense of community, we are a good investment. I say “we” because although she cannot do very much of the physical work, she knows more about it, and comes along to mentor and support me, every step of the way.
“Every step of the way.” That’s the pivot phrase to my topic at this moment. Like my mother, I have narrow feet in a common size. Well, almost a common size — one is a seven and one is a seven-and-one-half. Many years,there are no shoes for me to buy, even if I need to, because the combination of style, fit, and availability never happens. For the past two years, that has been the case with sandals. Gladiator sandals — especially with three inch heels and dog collars around the ankles — just don’t meet my needs. But my previous sandals had fallen apart, except for two last pairs, thankfully in very basic colors. Being on a limited budget, I was racing to every clearance bin and clearance website I could find, for better colors and nicer styles.
Finally I succeeded. Black, blue and brown. I like to also have multicolored and red — and I love this year’s corals, mustards,and olives — but care-giving is not that kind of lifestyle. So, basics only.
My wife has one pair of LL Bean sandals, and would never dream of having more. She marvels at my accessories fetish. But here’s the kicker: when the shoes arrived, she asked if I had put them on HER credit card.
“Of course not! There are MY shoes.”
“These are OUR shoes.”
“There are things that are mine, and shoes are one of them. If you were a man, you’d never question a wife buying some things on her own, with her own money.”
Okay. But what made her say that?
Is it because she has more money from family sources? In reality, our family resources are pretty equal, but I am trying not to exploit mine. I encourage her to be more cautious with hers as well.
Or — and this didn’t occur to me until much later — is it because she wants to thank me for all the work, and to treat me to something she knows I need and want, in one of the few ways she can?
I could ask her, and that would answer this question for us. But I’m writing this to say that care-giving has cast a different light on a long-held calculation.