We hear it all the time — and I’m sure we’ve all said it, too — our society doesn’t value family caregivers.
It sure feels like we aren’t valued. Doctors refuse to share vital information with us, while they’re pushing more and more responsibilities on us — assuming we’ve got the time and the skills to be chauffeur, nurse, housekeeper, and errand runner.
But then there’s the stuff about how we’re saints and heroes. I personally find it cloying. I do not feel like a saint when I’m changing my grandmother’s diaper while she’s shouting for the neighbors to save her. It does not feel heroic to go to a dozen pharmacies in one day or spend hours on the phone to fix clerical errors. Was it my mission to be put on this earth to fill out insurance paperwork? I hope not.
Many of you feel differently and I’m not here to disagree or dissuade you. We each have our own calling, but the incredible number of people who find themselves responsible for the selfless care of someone else is so high I suspect this isn’t everyone’s reason for being.
Caregivers feel marginalized — are marginalized — despite how common we are. Why are family caregivers asked to give up months, years, or decades of their lives to care for someone else without any pay? The tremendous cost of caregiving leaves many family caregivers destitute, unemployable, and without a safety net of their own. Who will care for the caregiver when they need it? Even the most fortunate caregivers are not insulated from the emotional devastation.
It’s the ultimate insult to our disabled and ill loved ones that their care requires martyrdom.
Yet caregiving is seen as vital. A common synonym for family caregiver is natural caregiver. It is seen as natural that we give this much of ourselves, often without support. When my mother was unable to pick up her uncle after a medical procedure and his neighbors kindly volunteered, he was given access to home health aides, along with visits from a social worker and a nurse. When my mother was there at the hospital, it was simply assumed she would fill all of those roles herself.
When I saw the headline “Healthcare is a Business and Not a Right” I couldn’t resist the provocative title. The author, citing economist Robin Hanson, presents a compelling case for why people are so disgusted by the idea of people being billed for medical care. Caring for each other — from cooking meals for each other to helping someone work through a problem to watching after a child with a cold — all fall under reciprocal altruism. These are transactions that fall outside of the market system.
My father is not going to invoice me for giving me a ride to the airport. My mother is not going to present a bill for our lunches together. My best friend does not charge by the hour for the times I ask for her advice. My former professors don’t charge me for their mentorship, even if it was once a responsibility under their salaries. That’s reciprocal altruism. We support each other without a quid pro quo.
You can see how much society values caregiver when someone shirks their caregiving responsibilities. They’re vilified. Even providing care in a way that’s not acceptable — like putting your mother in a skilled living facility you’ve so carefully vetted and visiting her every day while finding a way to cover the costs — will get you snide remarks or open accusations of neglect.
Reciprocal altruism works just fine for a short-term illness. Chronic illnesses that are manageable work well, too. Yes, there is a cost of co-pays, out-of-pocket care, getting to and from appointments, and missing days of work. The community rallies around when someone falls ill or has a flare-up. Most of us weather this without major sacrifices. It feels like part of life, family, friendship.
The system falls apart when an illness is prolonged. The community does not maintain that rally for months or years. Your relationships suffer. The bills pile up. Friends drift away. You realize you cannot keep juggling work and care. You tap into your retirement. Then you sell your home. The bills keep coming. You grow increasingly isolated. You’re stressed to the point where taking care of yourself is not an option. Even the co-pays add up quickly. The medical supplies, the cost of parking. There are patchwork systems of support, but even the few who qualify for it find that it is not enough.
The question I hear most often is “How can I get paid as a family caregiver?” It is always couched in apologies, guilt, and shame. The explanations for why they do not want to ask for money for their time and sacrifices, but they are forced to.
When you get yet another bill for thousands of dollars and overhear someone else claiming “Their love is all the payment I need” it’s enough to make you lose it.
Our legal system and our society are set up for an age when the ill rarely lingered. When people with disabilities died as children. When the elderly were rare — having survived a gauntlet of accidents and illness — and could be cared for by women who weren’t permitted to work outside the home. Surely, we do not want to return to that age.
Our world has changed. Huge medical breakthroughs mean we can keep people alive longer — but no one has set up the systems to support them so they can thrive. We save them and then we send them home. This wonderful scientific advancement is creating it’s own carnage of people who aren’t being allowed to reach their potential.
The levels of care required are not natural. So many caregivers face a burden that is too great to carry on their own.
Unlike McArdle, I do believe healthcare is a human right. However, in a world where there are so few objectively right answers, she makes a powerful argument. If we all have the right to healthcare, why is it individual caregivers who are bearing the cost?
As Director, Cori develops our comprehensive global communications and development strategy. She’s constantly tweaking our services based on data-driven marketing metrics and feedback from caregivers. She works to grow our community and build the reputation of The Caregiver Space by amplifying the message on social media, cultivating relationships with experts, creating organizational partnerships, and earning media coverage. She’s an active member of the community and regularly creates resources for Caregivers.
Cori joined The Caregiver Space after a decade of serving as a communications consultant for a number of nonprofit organizations and corporations furthering sustainable energy and urban planning solutions.
Cori has an MA in Corporate Communications from Baruch College at CUNY and a BA in Media Studies from Eugene Lang College at the New School University. She divides her time between Brooklyn and Toronto.