Oct 25 2020

This is quite a roller coaster, this parenting gig. Especially parenting someone who’s really sick. Today was not one of my finer moments. And to be clear, I don’t say that to solicit sympathy. My actions were entirely defensible, but just not as kind as I want to be. 

Our loved one does not have a winter coat. Their last one was lost during an acute crisis in January 2020.  That, plus subsequent hospitalizations meant it wasn’t replaced.  Today, we were going to get a new coat, especially after a few days out overnight. I’d rather have them warm, if I can’t keep them here.  

We headed to Target. It was too much stimulation, too many choices, too many people, too much light and noise. They were increasingly unpleasant, withdrawn. We got a coat, and as my husband headed off to return something to the racks, our loved one headed off another direction.  I dutifully followed. Soon after, my husband called me, asking where we’d gone. 

Unfortunately, within earshot, I said that I always had to follow them. I was exasperated with their increasingly testiness, and they rightly heard my frustration. I’m sure it made me sound condescending, as if I was taking care of an ill-tempered toddler.  

But here’s the thing. Our loved one isn’t a toddler. They aren’t really ill behaving.  The illness is.  Unfortunately, my comment resulted in them yelling and swearing in the store, and storming out to wait in the car.  I’d set up an expectation of ill-behavior, and I’d gotten it.  

Not only is our loved one not a toddler, they want agency over their life.  Of course they do. They’re a young adult.   If our loved one had cerebral palsy, or a broken limb, we’d bend over backwards to give them a sense of autonomy and agency. Because the illness makes them testy and unhappy, it’s sometimes harder to remember that they deserve the same care and I owe them whatever agency they can manage.  

At parent support groups, there’s a standing joke or truth that this illness never or rarely results in casseroles being dropped off by well-meaning neighbors.  Sometime it’s attributed to stigma.  I think it’s less about stigma and more because we presume people will be appreciative, or grateful, or kind in response to our kind deeds. Or sweet in their illness.  That’s not the experience with this disease.  It leaves the victim with little to be appreciative or grateful or kind about.  

Today, I fell pray to the casserole maxim.  I didn’t afford them the same kindness I would have with other illnesses.  

What to do about that?  

I think it’s just a continual effort to remember that illness is illness. I take care not because of anything I’ll get out of it, but because I genuinely want to care for those who are hurting. I need to remember that in their hurt, they’re not always going to be sweet, especially when the disease is permanently damaging those very parts of the brain. 

I write this not to receive positive comments or sympathy. It’s a way for me to process the challenges of living in this house.  And a way to help anyone reading to remember that we help because it’s the right thing to do, not because someone deserves it, or repays it, or even acknowledges it.