Feeling stuck in the repetitive routine of caregiving

When I wake up in the morning, I do the same things in the same order:

1. Examine the pillbox.
2. Send a text to my mum to check if she’s slept.
3. If she doesn’t respond within 10 minutes, I begin to panic silently.
4. Repeat.

I haven’t missed this routine once in the three years since my mum was diagnosed with myeloma.

On some days, myeloma caregiving feels less like a journey and more like working hard on a treadmill. The scenery and routine don’t change, but my entire body, especially my legs, is aching. And I haven’t even mentioned the burden I feel on my heart at times because of the guilt I experience as a caregiver.

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The tyranny of the routine

As a caregiver, I’ve observed that the predictability of the process can cause a peculiar kind of exhaustion.

Blood tests on Tuesdays. Chemotherapy on Wednesdays. Doctor appointments every third Thursday. Scans on the first Friday of the month. And then there’s the same three questions that well-meaning friends must ask: “How is your mum doing?” “How are you faring?” “What is the latest?”

Even when I’m asleep, I can see myself rehearsing some of these conversations. In fact, on some days, I actually do.

With time, even the crises begin to show signs of familiarity. The sudden fever. The unexpected spikes in Mum’s body temperature. Bleeding profusely from even minor injuries. The bags we packed hurriedly before rushing to the hospital. The way time just goes on and on in the emergency room, stretching thin like taffy that’s been pulled too tightly.

One would think that caregiving would become easier with repetition — the same process every day, every week, every month, every year. But it doesn’t. You still get so tired, worn out, and exhausted in a way that even deep sleep cannot rectify.

The hidden rhythm in the repetition

However, recently I discovered that buried in the similarities are small rebellions. You have to be especially observant and sensitive to notice these, especially when a repetitive routine starts to get to you. For instance, I’ll notice:

• Every time I ask my mum, “On a scale of 1 to 10 …,” she’ll roll her eyes but still give me an answer.
• What about when I’m alone in the hospital parking lot, drinking coffee at 5 p.m.? I always enjoy watching pigeons fight over a bread crumb.
• And then there’s the nurse who still recalls that my mum loves to garden. When the hospital discards its flower arrangements, she saves them for my mum.

Are any of these things milestones? No. And neither would they make it into the highlight reels. However, if anyone is wondering why I haven’t gone mad, these moments are the reason.

For anyone stuck in the loop

If your days as a caregiver seem to blur together, remember:

• Search for the “micro-moments,” like the inside jokes that only you and your loved one understand, or the way the light slants into the infusion room at 4 p.m.
• Repetition doesn’t mean you’ve failed. Instead, it’s evidence that you’ve continued to show up.
• Permit yourself to be carried by routine, especially when willpower is lacking. You’ll discover that autopilot can be a real gift on some days.

This season won’t last forever. One day, it’ll come to an end. And as strange as it might sound, I’ll likely miss these routines and the rhythm in them. I might even long for them, especially the certainty of knowing exactly what needs to be done, even when it’s difficult and challenging to do so.

However, until then, I’ll continue sending text messages, counting pills, and observing pigeons. Somewhere in all this familiarity and sameness, we are still alive.

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.