The unspoken weight of becoming a caregiver

I’ll never forget the day that my mother was diagnosed with myeloma. That was when the word “son” was entirely erased from my identity.

Without any warning whatsoever, I became everything to my mother: her advocate, nurse, and custodian of all the secrets she wasn’t confident (or trusting) enough to speak aloud. This column is for all of the weary and worn-out souls who have ever Googled the phrase “caregiver mental health” at 2 a.m.

My name is Samuel Ike. I’m a freelance content writer by profession and a caregiver by circumstance. My mother was diagnosed with stage 3 myeloma in 2022, when our lives were broken into “before” and “after.” I’ve written for Meer.com, Venture Magazine, and several other publications. In the process, I got used to juggling multiple writing projects, attending virtual meetings, and meeting tight deadlines — the roller-coaster ride you can expect from freelancing. In a way, I felt that I was experienced, skilled, and capable of handling anything that came my way.

I was wrong.

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Finding out how unprepared I was to take care of my mum was a rude awakening. It felt as if I’d woken up from a dream to meet the bitter reality of the moment.

Nothing in my whole life had prepared me for the loneliest job I’ve now grown to love.

And if you’re wondering if I have any qualifications to handle this column, you can rest assured that I do. My credentials are a Master of Science in hospital parking lot meltdowns and a PhD in pretending that I’m doing great.

Our story

My mum and I have come a long way since her diagnosis. That first year was a blur of confusion.

Yes, I can still recall the guilt (when I disliked how needy she was all the time). I also remember the medical gaslighting (“It’s merely aging,” we kept hearing). And I recall her bones betraying her (when her ribs snapped because she hugged her grandson on his birthday).

Despite all that we experienced during that first year, however, we were still lucky enough to discover light:

• Small victories: the day she walked to the garden in the backyard all by herself.
• Our chemo rituals: binge-watching mystery shows on Netflix and me smuggling chocolate to her during hospital admissions.

The truth no one tells you is that in order to be a caregiver, you must know how to love: love your patient, love what you do, and love yourself. But a caregiver should learn to embrace grief, especially regarding the connection and relationship you’re bound to lose. Caregiver grief is very real and always present, especially for first-timers.

I want this column to be:

1. A place to share the bitter and messy truths of caregiving. For instance, do you know how much I miss the days when my mum was just my mum, and not my patient?
2. A practical kit for survival. Here, I’ll explore ways to steal moments of joy even in the midst of chaos and confusion. I’ll provide scripts for tackling insurance and even hacks for the emergency room.
3. A megaphone for our community. Your stories will also reside here. You’re welcome to comment on any of my posts. You’ll be amazed at how refreshing and uplifting it is to share your unspoken weight with others.

Raising our voices

I don’t have all the answers, but I do have my voice. I’ve been caregiving for three years now, but I still feel lost, confused, and even anxious, like a patient having his first scan. There’s still a lot that I don’t know.

But I’m grateful for my voice — the one I use to ask doctors and other caregivers questions when in doubt. The one I use to speak out on behalf of my mum, and to write when I feel anxious, burned out, or stressed. The voice I’ll now use to drag our hidden struggles into the light.

The load that caregivers carry doesn’t disappear when we name it, but talking about it can help us realize an unmistakable truth: We’re no longer bearing the load all by ourselves.

I invite you to join me on my caregiver journey so we can share our unspoken weight together.

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.