January 2009
It’s a cold and dreary day here on Long Island. The trees have given up their leaves and gone into hibernation. Photosynthesis has ceased due to declining sunlight and colder weather. My mood is right in step with it.
The people who came to see Deb after she was released from the hospital a month ago are thinning out, (the transformation chapters) just like the many migratory birds that have gone South.
I see what is transpiring. The support of the community circled their wagons around us, but that formation is dissolving. There are really only a few wagons left. Even Deb’s brothers have returned to their endeavors. I knew this to be the pattern. It’s just like a funeral.
And now, today, looking back over the last 17 years, I realize what has happened.
The Invisible Erosion
Understanding Caregiver Selfcare
It doesn’t happen all at once. Nobody wakes up one morning and decides to disappear.
It starts small. You skip your workout because there’s a prescription to pick up, the condo is a mess, and the added chores are time bandits. You’re constantly telling her, “Please drink your water.” All day. Every day. You tell yourself you’ll sleep properly next week, when things settle. Except things don’t settle. They just shift into a different kind of chaos.
You get into that ugly rabbit hole of negative thoughts. You have been doing this for such a long time. You feel like you are in the late rounds, your legs wobbly, ready to give out from under you. The exhaustion that comes from your Groundhog Day-like, grinding existence.
I pull out a packaged frozen meal; and pop it in the microwave. I get my loved one to the dining table, but I’m not feeling very loving. The medical appointments, the same questions asked over and over from severe memory loss — shot at me like the tiny arrows pricking my skull, like those fired by the Lilliputians at Gulliver. You just want to get to bed. But you can’t. Not until……..
And….. I am not getting any younger.
This is the invisible erosion of caregiving. You give, and give, and give — and because nothing dramatic happens the moment you stop caring for yourself, it’s easy to believe you’re fine.
Until you’re not.
Creating an Oxygen Mask
“In the event of a loss of cabin pressure, place the oxygen mask over your own face before assisting others.”
I heard it hundreds of times over my career when starting out on a business trip….. Never really thought too much about it.
Until now.
Why I Resisted creating my Oxygen Mask
Here’s what very few people understand: the resistance isn’t laziness. It’s love.
When you care deeply about someone, their needs feel urgent and real in a way your own needs don’t. Their disabilities are visible. Your exhaustion is internal. And we live in a culture that quietly applauds martyrdom; it nods approvingly at the caregiver who “never complains” and “always shows up.”
So we perform strength. We push through. We wear our own depletion like a badge. And sometimes feel very invisible.
Everyone asks me, “How is Deb doing?” They love her. And I understand the bonds; she is still a very special, loving person.
I have a close friend I haven’t seen very often since we left Long Island. He is also a long-time caregiver to his lovely wife, who suffers from MS. His situation is much more challenging than mine. That thought — it could be worse — is a mantra I share with others. And with myself.
But here’s what I’ve learned, slowly and sometimes painfully: a depleted caregiver isn’t a devoted one. They’re a struggling one.
What Putting my Mask On Actually Looks Like
I’m not talking about spa days or weekend getaways. But if you can manage those, take them without a shred of guilt.
I’m talking about the small, non-negotiable acts that keep you capable. Human. Present.
Movement. Even twenty minutes. A walk around the block. A bike ride. A class at the gym. Your body is doing physical and emotional labor that most people can’t imagine. It needs to move.
Sleep. Not perfect sleep — caregiving often makes that impossible. But protected sleep. A few hours that are yours. A boundary around rest. I’m in bed at 10 PM: sometimes even 9:30; rarely later. It gives me a couple hours before I get up to get her secure. Sometimes she goes to bed on her own; and other times, I have to get it done.
One thing that’s only yours. A hobby. A friendship. A show you watch with no one else. Something that reminds you that you exist outside this role. For me, it’s my bicycle and my classes I teach at the Y across the street. Seemingly small. But so, so precious.
Saying it out loud. Telling someone; (very important) a friend, a therapist, a support group what you’re actually carrying. Not the sanitized version. The real one. This blog, for instance.
I’ve learned how to protect some things that are mine and non-negotiable. The cycling workouts early in the morning. The classes I teach. None of these are a luxury. They are my oxygen mask. They are what keep me in the ring, moving, and able to care for Deb.
The Permission Slip You Didn’t Know You Needed
If you’re reading this and feeling a touch of recognition of that quiet guilt, that gut-deep tiredness, I want to say something clearly:
You are allowed to matter in your own life. It’s not selfish. It’s Self-Care.
Caring for someone else doesn’t mean erasing yourself. It means showing up, day after day, with enough left in you to be genuinely present — not just physically in the room, but actually there.
The oxygen mask isn’t selfish. It’s the only reason you’re still able to help at all.
I am still like that small boy at the blackboard, trying to solve a problem I didn’t study for. There is still guilt. Still fear. Still the occasional thought of not doing enough. Feeling Lost and Exhausted. It still happens. AN Eight Count. It’s OK. I Recover.
Those thoughts come and they go. I don’t hold on to them. The wind is usually blowing, and I release them out to the ether.