God bless the woman shown above. I don’t know her, but she is a real human whose image ended up in the adobestock collection. She stands out because she’s the only one in this virtual sea of images who embodies the true starkness and devastation of dementia.
Nobody wants to see her. Our culture actively runs away from her.
For example, try googling “dementia patient,” and then hit “images.” Nothing is more infuriating. It’s all smiles. Or perfectly healthy people, slumping over on purpose, making sad faces in their beds. Or the gentle elderly doing puzzles with encouraging nurses at their sides. Jesus, you can practically hear the Disney birds tweeting in the background.
Nowhere is the real deal represented.
Nowhere will you see the caregivers’ bone deep frustration, their faces hardened by their daily Sisyphean labor.
Nowhere will you see the lost and furious shell of a once functioning human, trying to machete their way through the jungle of chaos into what they want to say.
Nowhere will you see the mouth bit shut against food or medicine, the desperate arms reaching for then shoving away assistance.
It’s the middle of the night, and I’m writing you from the trenches of dementia and its surviving victims: my mother-in-law, her aides, my wife and me. Like millions of others in this position, we are stretched to our limits. My wife has been adamant about keeping her mother in her own home for as long as humanly possible, but that ship has now sailed.
So she’s moving in with us.
I’m not sure we’re physically equipped to handle this. Are we strong enough? We have been truly blessed with independent caregivers, but as my mother-in-law’s strength deteriorates, their backs are giving out. Ours too, along with our stamina, our hope, our resolve. Which brings me to whether we’re even emotionally equipped to handle this. Not sure about that at all.
On closer inspection, though, this is just fear. I’ve found that when you actually have to step up, and you decide to go for it, the strength comes from somewhere. It does. But you have to stand firmly in “I don’t care if I’m not ready. I’m doing it.”
“Go to your edge, then soften.” Those words were spoken by the great meditation teacher, Tara Brach, in a dharma talk about managing difficulties using a Western Buddhist approach.
As I picture what this could mean for me, I tune into my current challenge.
What’s my edge?
It’s the bone deep fatigue, the uncomfortable groundlessness, the frustration. I feel an obsessive need to do crossword puzzles, play Wordle, watch Netflix, you name it. It takes a huge amount of discipline to stop and even just feel my edge.
But then to contemplate softening into it? What does that look like?
The turning toward that fatigue, that bardo of boredom, offers those feelings a tender place to land, a welcome, a generous seat at my table. It looks at fatigue and says, “Of course, you’re tired. You’re human. Everyone has limits. Respect yours.”
It looks at the uncomfortable groundlessness and reminds me, “Nothing we stand on is real. Everything that seems like the ‘ground’ to us is impermanent. It dissolves in our hands if we watch mindfully enough. Let go of having to identify certainties, of having to certify identities. Celebrate the color, sound, and sensations that you’re feeling right now as you read this.
It’s all you’ll ever have. The right now. The just this.
Softening past my edge looks at the frustration I sometimes feel when I listen to Mrs. T repeat a phrase 947 times. The softening asks me, “Does she need to be different for you to be happy?” If I need her to be any certain way for me to be happy, then I’ve just abdicated all agency over my own joy. Sitting with this question often puts the power to be happy back where it belongs, in my own heart.
Surprisingly, this softening into discomfort engenders a feeling of enrichment, of being worked on, even transformed by the pressure — instead of being annihilated by it. Something like an aerator breaking up the soil by pummeling it with holes. It keeps the grass healthy and thriving, opens up the stuck places.
Our loveseat goes up for sale tomorrow. On Friday my reconfigured bedroom in the basement takes its final shape. Next Tuesday, the movers will bring some of Mrs. T’s furniture into our home. On that day, she’ll wake up in her house, but go to sleep in ours. Her house will be up for sale by March 1st, if the gods are with us.
Despite millions of well-intentioned people, our country’s attitude toward elders is broken. The resources available to those in late stages of life (and their families) fall shockingly short. Finding the proper solution(s) is impossible without a great deal of silence, humility and mindful listening. We don’t do a lot of that here in America.
But you can. I can.
We can choose to sit in silence for a few minutes every day, and watch our mind.
We can choose to feel into our edges. We can resist the urge to run the other way, and instead soften toward whatever we fear so much.
Every moment is the best moment to practice this. It's where the rubber meets the road. It's where practice meets resistance. This is where intention becomes action.
Let’s go to the edge of our respect for elders. Let’s go the edge of our own resistance to that work. And then, please, let's all soften into tenderness--toward them, toward the world that will not meet them where they need it, and toward ourselves.
Being a human on earth is hard.
It matters what we do.
Soften into love.
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