The hardest part of being a caregiver is the need to constantly observe
Watching over my mum, who has myeloma, requires persistent presence
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Some days when I’m caregiving for my mum, I’ve noticed that the hardest part isn’t what one might expect.
The hardest part doesn’t have anything to do with admin work or repetitive routines, which I’m used to. Nor is it the need to lift my mum from her bed.
It doesn’t have anything to do with the medications she’s taking for her myeloma, nor is it related to the endless questions I ask her doctors, especially when they sometimes disagree.
The hardest part of caregiving for me is the watching.
A familiar silent aching
Whenever I sit by my mum’s bedside, whether at home or in her sickroom at the hospital, I transform into a silent instrument of observation.
My eyes have learned how to study the small script of her body — the way her breathing changes rhythm when exhaustion settles in more deeply than yesterday; the faint and almost unnoticeable tightening around her eyes when pain arrives unannounced; the almost undetectable tremor in her hand as she tries to pick up a glass of water. Each of these details, along with others I observe, are like sentences I must know how to translate without a dictionary.
Keeping constant watch over her is its own form of labor. Watching my mum like this requires persistent presence while demanding that I remain virtually invisible. Maybe it’s one of the reasons I sometimes hide my identity as a caregiver.
Whenever I see something, I might not always be able to immediately fix it. I can only record it in the ledger of my mind. Some days, the entries I make are soft and tender, such as a moment of clear speech, a steadier step, or a smile that reaches her eyes. Other days, I take heavier notes: restlessness that refuses sleep, the slow retreat of appetite, or color draining from her face. In my mind, I take note of both kinds of entries with a familiar silent aching.
A strange thing I’ve noticed about this watching is how it has the ability to reshape time. Minutes elongate into cautious measurements. An hour can be perceived like meticulous archaeology; it’s as if I’m digging for indications of what is whole underneath the surface.
During those prolonged stretches, I observe how my breathing automatically syncs with my mum’s. It’s as if my body is attempting to hold the line with her.
I’ve also come to realize that this labor of observation is equally an act of love. It is the eagerness to bear witness without turning away, and the readiness to stay present despite the uncertainty.
Caregiving requires that we display patience. It’s not a race, and no one should expect any medals for the invisible labor we perform. There’s also no checklist to be completed, unless we count our own self-care. All that’s required is our steady, unseen work, always ensuring that we see our loved ones completely, even if what we observe hurts us.
Eventually, maybe the greatest strength we caregivers need to display isn’t action, but rather mellow, undeviating attention — the silent bravery to continue watching and loving what we see.
Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.
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