How I’m dealing with caregiver guilt while caring for my mum
Such feelings are normal when looking after a loved one
I wanted to scream at my mother last Tuesday when she insisted on skipping her medication because she didn’t feel like taking it. While she slept, I stared into the mirror and asked myself, “Am I a monster?”
The truth is that I’m not angry at my mother, but at what her ailment has done. Her myeloma has transformed me into a complete stranger. It’s made me an unrecognizable, exhausted, and angry version of myself.
Have you ever felt ashamed of yourself for resenting the person you adore so much? If yes, then today’s column is for you.
A couple months ago, I used to battle with guilt daily. But these days I’ve learned how to recognize it and accept it. As a caregiver, I’m bound to experience feelings of guilt, and that shouldn’t make me feel bad.
I now realize that feeling guilty doesn’t mean I’m a bad caregiver. It only means that I’m human.
The lie I used to believe
I remember one night when I was alone in the pharmacy parking lot feeling tired to my bones. I was exhausted after visiting four pharmacies in search of a myeloma medication for my mum, but it was out of stock everywhere.
As I contemplated where I could check next, a man drove up to me with a wide grin on his face. “Isn’t this such a lovely night?” he asked.
“Is it?” I retorted without thinking.
“Take it easy, man. Are you all right?”
“I’m fine. What can I do for you?”
“I just arrived in town. Can you suggest a fine place I can go to relax?”
“You want to relax?”
“Why not? Or don’t you relax?”
I gave him some directions.
As he drove off, I couldn’t help but envy him. Here was another man living a normal life, relaxing and enjoying himself, whereas I was running errands that would decide my mum’s survival. That thought really got to me. I felt broken and wanted to cry after comparing myself with that man.
I used to think I wouldn’t be envious of other men who weren’t caregivers. That night I discovered how wrong I was.
Guilt has a way of eating into your bone marrow like the cancerous cells of myeloma.
I recently discovered that the guilt we caregivers feel can sometimes be grief in disguise. I always thought that feeling guilty meant that I cared. I didn’t know that guilt was stealing my ability to care for my patient.
If you’re a caregiver and want to take control of these negative feelings, then try reframing the following statements:
- “I don’t deserve help.” → “Would I judge another caregiver for needing a break?”
- “I’m failing her.” → “She’s alive. I’m here. That’s victory.”
- “I should be stronger.” → “I’m strong enough — see proof below.” (List three small wins, such as “my patient took a shower today.”)
The truth about caregiver guilt
The thing about guilt is that others can see it written all over you, no matter how hard you try to hide it.
The day after I almost screamed at my mother for refusing to take her medication, she asked me what was wrong. Of course, I lied to her, insisting everything was fine. But she didn’t believe me. It was obvious that my guilt was visible even when I thought I was doing a good job of masking it.
She comforted me, saying, “You are not my martyr. You are my son. I don’t need a superhero. I just need you as you are, as my son.”
Talk about a role reversal. Here was my mum, my patient, comforting me, her caregiver.
As family caregivers, it’s natural that we love the person we’re looking after. But even loving someone can be hard sometimes. Our feelings of guilt are the tax we pay for loving our patient.
I recently learned a secret about guilt. I discovered that the moments when I felt the least guilt were the ones when I allowed myself to be furious, flawed, and completely human.
My mother doesn’t require a saint or a superhero. All she needs is me — cracked voice, spilled pills, and everything else.
And if you’re reading this through tear-filled eyes, believe me when I say you’re already enough.
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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