Gene Hackman and Betsy Arakawa’s deaths, and the silent fear that haunts every caregiver

When I heard the news about how Gene Hackman and his wife, Betsy Arakawa, died, I felt a chill of recognition.

She was seen on security video buying medicine at a pharmacy the day before she likely died of hantavirus. According to the medical examiner, Hackman, who was in poor health and relied on her as a caregiver, probably died a week after she did.

Once she was dead, there was no one to care for him — no one to provide medicines, food, or comfort. This is the shadow that follows every caregiver.

It stalked me during the year I cared for my husband after he had a stroke. The 3 a.m. worry wasn’t some abstract fear of my own death — it was the gut-wrenching knowledge that my absence would be catastrophic. Every time I left the house to get something from our detached garage, I felt a moment of panic: What if the door inexplicably locked and my husband was left alone in the house? Would he remember where I had gone? Would he know who to call?

Or when I was walking the dog and she lunged for a squirrel, my brain immediately flashed to: If I fall and break my hip right now, who will change his catheter tonight? Who will know which pills come at 8 p.m. and which at 10?

When my doctor called to tell me I needed surgery, I immediately opened my husband’s care calendar and began calculating. How could I schedule my surgery between his physical therapy appointments? Who could give him his medications while I was under anesthesia? Could I postpone it until after his quarterly neurologist visit?

I sat there, planning my own essential medical procedure around his care schedule. This is what it means to disappear into caregiving. My own body had become just another logistical problem to solve in the complex equation of keeping him alive.

Caregiving isn’t just work — it’s an invisible chain binding you to another human being whose survival depends on your continued existence. We manage medications, coordinate medical appointments, fight through health-care bureaucracy, cook meals, clean bodies soiled with the indignities of illness, and somehow still try to provide the love and humor that makes life worth living.

We are nurses without licenses, case managers without credentials, therapists without degrees, all while being spouses, children, or parents first.

And we are disproportionately women.

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The weight of it crushes you not in dramatic moments, but in the constant, grinding awareness of what’s at stake. When I felt a cold starting, I didn’t think, “I need rest.” I thought, “Who will lift him from his wheelchair tonight?” When crossing the street, I didn’t casually step off curbs — I saw every cracked sidewalk and distracted driver as a potential catastrophe that would create two victims: me, and the person waiting at home for me to return.

Even simple pleasures become impossible calculations. That glass of wine with dinner? What if there’s an emergency and I need to make critical decisions? That invitation to meet a friend? Who will be with him for those three hours? The mental math never stops.

This isn’t anxiety or paranoia — it’s the brutal reality of a society that treats caregiving as a private burden rather than a collective responsibility.

We’ve normalized the expectation that individuals — mostly women — will sacrifice careers, financial security, and their own physical and mental health to provide care worth billions to our economy, all unpaid and largely unacknowledged.

We shouldn’t pretend caregiving is a private family matter when it’s holding our entire health-care system together.

When my husband was paralyzed from his stroke, well-meaning friends would say, “Let me know if you need anything.” This offered momentary comfort but little practical help. The mental labor of identifying and articulating needs was itself exhausting. What I needed wasn’t vague offers but specific actions: “I’m bringing dinner Thursday,” or “I’ll sit with him for three hours this weekend so you can rest.”

Now, caring for my adult daughter after major surgeries, I’ve learned to be blunt about what I need. But I shouldn’t have to be. We shouldn’t pretend caregiving is a private family matter when it’s holding our entire health-care system together.

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What would real support look like? Paid family leave that doesn’t bankrupt you. Home health aides you can actually afford. Respite care covered by insurance instead of being treated as a luxury. Training programs that give friends and family the skills to actually help instead of just watching helplessly.

But most immediately, it requires those around caregivers to wake up. Don’t wait to be asked. Look and see what’s needed. Replace “Call me if you need anything” with “I’m coming over Tuesday at 2. What should I bring?” Replace sympathy with action.

Because someday, that caregiver you know — your mother, sister, daughter, friend — will face the same terror that quite possibly consumed Arakawa in her final hours, the same fear that kept me up at night: What happens when I’m gone?

And the answer shouldn’t be what happened to Hackman.

Elizabeth Kleinfeld is a writer and professor from Colorado. Her essays about grief have been published in the Boston Globe, Herstry, Bright Flash Literary Review, and her work has been nominated for the Pushcart Prize. She blogs about grief and disability at substack.elizabethkleinfeld.com.