Artist in residence spotlight: Actor, Caregiver, and Thinker - Act 3
Our Artists in Residence program provides an opportunity for people affected by dementia to share their experience through writing or art. The following reflection was written by Tobias Jesso during moments of respite from caregiving — often while Marsha, his 69-year-old spouse, was sleeping.
A Prescription for Mindfulness
Byung-Chul Han writes that modern life turns us into achievement subjects — forever producing, proving, performing. In caregiving, that pressure becomes relentless: be endlessly patient, strong, available.
In Camus’ day there was at least an external boss you could leave behind at day’s end. Modern caregiving installs the boss inside your own head. You can’t get away from its commands, and burnout soon follows.
But caregiving is not a productivity metric. It’s a shared presence. Han calls it “the violence of positivity” — the demand to always say yes, to be endlessly capable. Han might say that this is the burnout society’s most intimate form: we self-exploit in the name of care. There’s no boss demanding it, only an inner voice that won’t permit rest.
The caregiver’s quiet rebellion is to whisper:
Enough.
I will rest without guilt.
I will not perform superhuman resilience.
This is not neglect. It is resistance. It is the choice to remain human — the choice to rebel.
Prescription:
- Rest deliberately — not just to recover, but as an act of selfhood.
- Create daily spaces where nothing must be achieved.
- Hold imperfection gently, in your partner and in yourself.
- Refuse the lie that love is proven by endless doing.
Camus gives the Actor a stage. Han gives permission to step off it sometimes. Together they remind us: caregiving is a human act, not a performance.
The Rebel Yell
Some caregiving tasks undo me every single time. I fall into that dark well of self-pity and self-judgment. I am failing, I think. I am neither philosopher, monk, nor mystic.
But I am a caregiver — rebelling quietly against despair and the absurd. Neither here nor gone, I am present for us both.
Meaning is not “out there” or “in here,” but between — like the current between two hands touching.
This simple insight transforms living and caregiving alike: you don’t make meaning; you realize it through how you attend, connect, and act.
Be present, here and now.
Attune to the absurd.
Resonate in relationship, in love — even when your partner no longer recognizes it.
Trust that your presence is enough. That trust is forged in the crucible of caregiving and the absurd — the eternal clash between our search for meaning and the universe’s silence.
Postscript:
In caregiving, finding someone to share my story with, without fear of being judged, is a powerful act of healing. I often feel guilty about not measuring up and that guilt can grow until it overshadows all goodness, turning even kindness into self-reproach. I am already drowning in the quiet demands of each day. I watch myself hesitate, lose patience, feel fatigue, and then the guilt rushes in—thick and familiar. I don’t want to deny my guilt but to see it clearly—to notice when it stops being my guide and starts being my torment.
I am trying to see myself clearly—not as saint or failure, but as one flawed person trying to stay kind in our struggles—that might be my small form of lucidity. Marsha and I are making meaning in our lives with and through our struggles. Comfort, money, and happiness are not to be sneezed at but “meaning” and struggle are connected not the others - Flashback to Victor Frankel in Mans Search for Meaning.
“For me the absurd man it is not a matter of explaining and solving, but of experiencing and describing. Everything begins with lucid indifference.” - Camus
And so I have tried to describe what I am experiencing.
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Tobias Jesso is a retired technology consultant with a master’s degree in computer science and a lengthy career spanning over four decades. He is especially fond of his work for TRIUMF, Canada's Particle Physics Laboratory.
Beyond his professional achievements, he is a devoted husband and father. Tobias and his wife, Marsha, have navigated the challenges of life, including Marsha's cognitive decline. Tobias approaches this journey with love and patience. At age 70, he continues to embrace the lifelong journey of becoming a better person, finding inspiration and wisdom in his spouse's daily teachings. Tobias states, Marsha teaches me as much now as ever and the lessons while hard are infinitely rewarding.
Would you like to tell your story through writing or art? We’ll work with you to find a platform to showcase your work. Email [email protected] to learn more.