Questions to ask a caregiver — and which ones to avoid

I recently went to the supermarket to pick up some groceries. While I was shopping for avocados, an acquaintance approached me.

“How is your mother?” she asked.

I smiled and gave my usual response: “She’s doing great.”

But by “great,” I actually meant that I was too tired, worn out, and exhausted to explain my mum’s condition. In fact, her hemoglobin that day was 8.3 g/dL. (Women’s levels normally range from 11.6 to 15 g/dL.) And about an hour before I left for the store, I had to calm her down and comfort her because she couldn’t stop crying about burning her toast.

Mum has been getting upset over little things, such as burnt toast, taps left open, and even misplaced clothes. I don’t know whether it’s due to myeloma or her growing older.

I’m not sure most people truly comprehend what I go through each day as a caregiver to my mum.

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The well-meaning scripts that fall flat

The truth is that every time I encounter friends, family, or acquaintances, our discussions seem to follow a very predictable pattern. And sometimes, I get tired of it all. I crave honesty more than etiquette.

Let’s take the following comments, for instance:

• “How is your mum?” → This question is too vague. Is this person just trying to make small talk? Or are they genuinely interested in updates on my mum’s scans, vitals, and well-being?
• “You’re so strong.” → Whenever I hear this compliment, I feel like I’ve been put into a cage. Sometimes it makes me angry, especially when it comes from my mum. And when I burst out in anger and see her cringe, I feel guilty.
• “Let me know if there’s anything you need!” → This is definitely a kind offer. But when I hear it, I’m forced to assign myself homework.

The questions I wish people asked instead

I don’t want to be asked questions that gloss over what I face every day. Instead, I want questions that acknowledge the complexity of a rare cancer like myeloma.

For example:

• “What is one small win you had this week?” (My response might just be: “My mum ate half a sandwich!”)
• “Do you want to vent or be distracted right now?” (This would reveal that the person has accurately gauged my mood and wants to respect my emotional bandwidth.)
• “What’s something you need today?” (This shows that the person has shifted their focus to my survival as a caregiver.)

Why this isn’t just about semantics

When it comes to caregiving, the language we use matters. In fact, language and tone shape caregiving just as much as medication schedules do.

Pity leads to isolation. I feel like hiding whenever I hear the “poor you” tone.

Specificity makes for better connections. A friend recently asked me, “Did they make adjustments to her dexamethasone dose?” and I almost hugged her.

Silence is also all right. Sometimes, a quiet “I am here” beats any question.

A challenge (without guilt)

Next time you talk with a caregiver, try swapping “How is [your loved one]?” for “How are you?” Or simply hand them a cup of coffee and say, “This sucks.”

Trust me, just doing that is enough.

To other caregivers: What questions do you wish people asked you more often? What questions do you wish they’d avoid? Please share in the comments below.

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.