When everything changes
You know the old adage “Everything changes.” Well, it does.
New parents proclaim in awe: “She’s changing every day!” as their child hits the landmarks: holding her head up, making eye contact, coo-ing, first steps… and caregiving a declining parent is like being a parent, in reverse. For Alzheimer’s, the landmarks are: first time mom thinks a banana is a flower. First time she can’t tie her shoes. First time she looks at me and says, “I know you… don’t I?”
Yes, sometimes it hurts. And sometimes it’s a relief, even a joy.
When it hurts, I cry. When it’s a joy, I laugh & sing… like at our summer outing to the Celtic Festival, where mom so completely listened to the rousing beat of the Drowsy Lads, thumping her hands on her legs, cheering in rhythm with their stomping, and hooting “Ha! Ha! Ha! Ha! Ho! Ho! Ho! Ho! Hee! Hee! Hee! Hee!” Her smile was absolutely contagious!
Life’s always good times and bad… why is it that some days are full of equanimity no matter what bizarre thing is happening, and other days I’m fit to be tied from one demented comment? What makes the difference? I could say grace, but grace sounds like pure chance. And pure chance is neither scientifically probable nor spiritually practical.
My experience is that I have control of very few things. No control over the weather, politics, accidents, the price of popcorn, other people’s behavior, or even what arises in my own mind in reaction to all of that. Yet when I exercise the control I do have, it makes all the difference in the world. Where do I have control? How do I take responsibility for what I have influence over, and let go of the rest? This is a live question for me, as it’s what makes the difference between my feeling alive or suffering caregiver’s burnout.
When I’m in a grim place as caregiver, pretty much guaranteed, I’m thinking I should have control over something…. that I don’t.
To help myself discern “where do I have control?” I have learned to get very curious about what seems most out of my control… like the sneaky symptoms of burnout that mysteriously appear out of nowhere: ennui, “not caring” about things, feeling tired even when I’m rested, or irritable and blaming myself and others for everything.
In practicing mindfulness, instead of trying to attack the “problem,” it’s essential to
step back (pause)
slow down (pause again)
and not try to change a thing
Here’s one way of letting myself get really curious about what’s present and true. Mom’s sheets are messy again and I’m thinking “whatever. I don’t care” as I start to clean up and notice that… actually I’m not noticing anything! I’m numb and going through the motions. Then step back (and pause). Look again at the bed, letting myself feel the dullness inside, and see the disarray. My brain commentary is something like this: “Uhg. How boring. It’s just a messy bed. Why would I want to experience this? What good would that do? Change the brain channel please, let’s get moving!”
Just by pausing with the ennui, the internal energy has shifted, so now I feel both agitated and bored.
If I’m determined, I can use that energetic juice to continue staying present. I slow down (pause again) and do not try to change a thing. Even after years of practice, I often coach myself through it: “Ok, you can be here. Breathing into the desire to change the ennui, really curious, what is this, how does it actually feel to ‘not care.'” and I pause, really pause and let myself experience what’s present … “Hum. Heart area aches. Downright hurts. Ouch!” and I let myself see the messy bed again. Or for the first time.
Now, a wave of grief washes through me, and with it, a warm tingling through my body. My vision becomes more clear, breath becomes easier, lighter. Mind is quiet. Sheets are dirty and in disarray. Thought arises: “Mom has declined another bit. I’m exhausted trying to keep up with the changes in care in the old way. I wonder what I can do differently?”
Nothing’s really changed. Except that everything has changed. I can see things clearly again, and my mind has a calm clarity that’s comforting.
The pause of mindfulness opens the window of possibility a crack… and grace only needs a crack to breeze through.
So, Listen up (talking to myself! If any of you want to listen in, go ahead ) When you hear the internal voice of ennui: “I don’t care about anything.” or the demand: “Something has to change! You need to do this or that better!” Get suspicious. Maybe something already has changed. Maybe something is out of control, and cannot be brought back into control, because it is not controllable. Maybe there is an unacknowledged loss that needs grieving, and then an adjustment to the loss, to the new situation, to the new normal.
Breathe. Be here. This is the only place to find yourself.