What Being A Brain Cancer Caretaker Teaches You

by Elaine Roth
Originally Published: 

There are a few truths in this life that I know for sure. I know immense grief changes you immensely. I know that sometimes the first breath you take after a loved one takes his last hurts more than any breath should be allowed to hurt. And I know that being a brain cancer caretaker teaches you about humanity in ways you couldn’t have imagined.

No one chooses to be a caretaker for a loved one suffering from brain cancer, just as no one chooses to be diagnosed with brain cancer. The disease attacks slowly and insidiously, often growing quietly undetected for too many years. When it does attack, it attacks victims and their families. It tears through relationships and inside jokes. It shatters plans and futures and hopes and dreams. It takes and takes, even when you have nothing left to give.

For twenty months, I was my husband’s caretaker as he did the hard work of trying to fight a relentless disease that refused to surrender even an inch. In those twenty months as a caretaker to a man who once upon a time took care of everything, I learned lessons that I’ve since come to realize are experienced universally by nearly every brain cancer caretaker I’ve met in my post brain cancer life.

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You learn how interconnected the mind and body truly are. You learn that personality and that intangible “thing” that makes you you isn’t actually intangible. It’s your brain. It’s an organ that is as vulnerable as any other organ. The first sign that a tumor had grown in my husband’s brain was not the headaches he was suffering or the Advil he was downing for the headaches, but the way the sparkle in his eye looked a little dimmer, the way he smiled a little less, the way his laughter didn’t fill the room like it did all the other times. It was subtle, and yet when I look back, it’s glaring.

You learn what strength really means. Strength isn’t carrying heavy things—both tangible and not. Strength is the force that keeps you standing when you hear the clinical trial failed. Strength is showing up day after day to fight a losing battle because a sliver of a chance is still a chance. Strength is sitting beside a hospital bed and holding a hand and listening to breath when there’s no fight left to fight.

You learn the depth of your compassion. There were days when my forty-year-old husband would look into my eyes after pouring cereal directly on the floor because he’d forgotten to use a bowl and he’d ask, “What did I do wrong? Why am I so confused?” The answer could only be “you did nothing” and “I’m sorry you’re confused, but I love you and we’re trying to make it better.”

You learn gratitude. Gratitude for every breath, every sunset. You learn the endless gratitude you feel toward receptionists who squeeze you in to a doctor’s schedule between patients, and the nurse who brings an extra blanket for you even though they’re only for patients, and the doctor who calls on a weekend because she’s as invested in your loved one as you are. You learn saying “thank you” never feels like enough.


You learn patience. And not just the patience required waiting for a doctor or a test result. But also the patience that comes with letting a moment exist without worrying about the next one, because too many times the next moment hasn’t been guaranteed.

You learn empathy. Simply that. You learn that whatever heartache you feel is only an ounce of the heartache raging through the person sitting on the exam table. You learn to quiet your own fears to make room to hold theirs. You learn to make space for their worries, so they can fight with a little less weight holding them down.

You learn grief. As you begin to lose the person you love even while they are standing in front of you, you learn the devastating heartache that comes with loss.

You learn about your humanity and how delicately all of it is balanced, how easily it can all be lost, how desperately it’s all worth fighting for.

Not every brain cancer caretaker has the same experience. Not every cancer caretaker has the same experience. But some lessons are simply universal, whether consciously learned or not. I would venture to say that all caretakers wish they hadn’t had to learn these lessons in the way they learned them. I would venture to say all are fundamentally changed for having learned them.

Vice President and presidential nominee Joe Biden is a brain cancer caretaker. I don’t know his son’s story. I don’t know how much he was involved in his son’s caretaking, but I know everyone who loves a brain cancer patient is a caretaker in some way. I know anyone who has ever loved and lost someone who fought against brain cancer is a caretaker in some way. When I think about the man who may be our future president, and the qualities of patience, empathy, compassion, and all the rest that are learned in the becoming of a brain cancer caretaker, I’m comforted to know that we’ll be in good hands.

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