Presence.

It’s been a long time since I cared for Dad on a day-to-day basis; something like eight years now. Time, of course, blurs events so that when we look back on them, it’s hard to remember exactly what we felt or experienced at the time. I tell stories about me and Dad and what happened, but they’ve become flat narratives for me and they don’t really affect me anymore. Every now and then, however, usually when I meet a caregiver who is right in the thick of the tough stuff, I remember all the feelings and things I went through.

I used to spend from Sunday afternoon through late Tuesday evening with Dad, living in his house, responsible for his well-being, entertainment, and physical and mental health. He was still fairly lucid, and could still take care of a lot of his own self-care, but I cooked, and drove, and cleaned, and shopped, and entertained. I spent a lot of time thinking up activities for us to do to avoid boredom, and most of the time I succeeded. It was exhausting, however, and when I think back and wonder why it was so exhausting, I realize that it was because I had to be so “present” – all the time.

If you think about it, most of us are fully “present” only periodically throughout the day. Much of the time, we are a little checked out, doing things on auto-pilot comfortably. At other times, we are relaxing, letting our minds and bodies rest. However, when you are a caregiver (and, probably, a parent) you are “on” almost all of the time. You are forced to be present and aware and prepared for anything your care receiver can get up to, including disappearing in a crowded mall, which happened to me once or twice with Dad.

Even when Dad was present and accounted for, I had to be available to him mentally and emotionally. I was always making sure my attitude was good and I was listening to what he was saying and what he needed. I was interpreting his repeated sentences, and garbled phrases for what he was actually trying to say to me. I was making sure I was always aware of the atmosphere and environment around us, including whether he was doing something that might freak someone out, or someone else was doing something that might freak him out. Even just being at home, or sleeping, was tough because I was always waking up hearing things, or making sure he was safe and not leaving appliances on. And, in our particular situation, I was worried about something vital falling off the house, seeing as it was in such poor repair!

Of course, cooking, cleaning, shopping, and dressing someone are all tiring but I remember the being present part as the most exhausting. I wonder if that’s how it is for other caregivers? I remember going home exhausted on Tuesday evening, and being tired and a little out of it on Wednesdays. And I’m one of the lucky ones; I could go somewhere else after a few days, unlike many other full-time, family caregivers! These days, I see Dad for a few hours a week, and he doesn’t move or talk much, so I forget how things used to be.

I really urge caregivers to be aware of this hyper-awareness because it’s something you just get used to doing and it can totally wear you out before you realized what’s happening. And for non-caregivers, who may wonder why their caregiver friends are so exhausted even though they’ve just been sitting around at home with their care receiver. Physically, they might not be doing much, but mentally and emotionally, they’re getting a full-on workout: being “present!”