In Go, Went, Gone, Jenny Erpenbeck tells the story of a typical man who discovers that there are people whose lives have been made impossible. The refugees Richard encounters are trapped in impossible situations. They cannot stay. They cannot return. There is nowhere to go. There is nothing to do. There is no money to pay for what they need. They cannot work.
The details are different, but the sentiment is familiar. It’s one of the things many family and professional caregivers have in common: their lives have been made impossible.
When someone says they’re not really a caregiver, do they mean that their life has not yet been made impossible by care work?
They can still cover the bills, somehow. They haven’t felt forced to quit their job, yet. They’re keeping up, barely. They can’t fulfill enough of their wants to feel like a human being, but they can still meet enough of their needs to keep going.
Quitting isn’t an option, anyway.
To be a caregiver is to hit the wall. You simply cannot continue. And yet you must, day after day.
You have to stay awake to monitor someone’s health, yet you are so exhausted that your body no longer obeys your commands and you begin to dream while ostensibly awake.
You have looked over the bills coming in, the insurance paperwork, the applications for waivers, the paperwork to demonstrate your eligibility. Not only can you not come up with any way to possibly make the numbers work, you can’t make sense of any of it.
You have so many competing demands, all of them mandatory. You’re no longer making choices based on what’s important, you’re deciding which is most likely to risk actual bodily harm.
The world is eager to cheer you on. To praise your resilience. To call you an angel. To say they don’t know how you do it. And they don’t know because you can’t, because you have been doing the impossible and somehow you will just keep doing it.
Peer support not only creates a space to feel less alone, it allows people to share how they’ve unlocked material resources — respite care, home modifications, debt forgiveness, insurance coverage, donated medical supplies — to help them stay in the world of the possible. It’s not enough. It’s what we have.
Once your life has become impossible, is there a way out? Can you go back to the world you left? Can anyone whose life is possible possibly understand?
I haven’t finished reading The Deficit Myth yet, but Stephanie Kelton’s book leaves me imagining a world where people are paid for care work. Where care work gets you those 40 credits to qualify for social security payments. Where professional caregivers are not only available for hire, but trained, paid fairly, and supported in their work. Where people with disabilities can work as much or as little as they are able without losing the benefits they rely on.
We’re so used to being told that there’s no money for the things we need. Kelton argues that there is money. That it’s not only a choice to allocate our tax money to deprioritize care, but even the fact that there’s not enough to go around is a choice.
People are imagining a world where caregiving isn’t impossible.
There are so many articles and initiatives. Care has become the word of the moment. Sure, I automatically rolled by eyes the first time I came across the term the Department of Care. It’s hard to tell the difference between real change and throwing a new label on the same old, same old. Still, I’m excited to see the work of organizations like Caring Across Generations. I’m excited to see people addressing the impossibility of care work as a result of the political and economic landscape, rather than anyone’s individual choices.
I skipped a newsletter because with all the Black Friday, Cyber Monday, and Giving Tuesday I couldn’t bring myself to add to anyone’s inbox.
If you’d like to make a donation to support The Caregiver Space, I’d really appreciate it.
If you’re in the US, there’s a special 2021 tax incentive allowing each person to deduct $300 in charitable contributions even if you take the standard deduction. This only counts for 2021 deductions. If you’re in another country, you can generally deduct donations to US nonprofits against any US sourced income you have, but check with your financial advisor to make sure.