It's time to talk

I know it's weird to chat up strangers. Here's why to give it a chance

When I first joined The Caregiver Space, I heard “only another caregiver can understand” all the time. The part of that statement that was rarely spoken aloud is “and I don't know any other caregivers.”

Statistically, though, that seems unlikely. There are a lot of current and former caregivers out there. Given the way I felt uncomfortable identifying as a caregiver and even now have only made peace with it as an administrative label, rather than an identity, I was curious to explore the identity politics of care work. I thought maybe our reluctance to identify as caregivers kept us from accepting and demanding support.

Then Mark Stolow pointed out that perhaps people weren't rushing to support burnt out caregivers because everyone appeared to be suffering from burnout. The buzz words that come up in discussions of care work — complex PTSD, anticipatory grief, compassion fatigue, boundaries, self care, grief — are everywhere. If the things caregivers are struggling the most with are widespread issues, why are caregivers finding it impossible to connect with the people around them? And when there are so many people with caregiving experience, why does everyone think they don't know any other caregivers?

I talked to a lot of different professionals and researchers working on projects to support caregivers. I talked to a lot of people enrolled in various caregiver support programs. I went to caregiving tech sprints, hackathons, and incubators working on caregiver support apps. There are lots of passionate people doing their best in wildly imperfect conditions to make a difference. Still, it was very difficult to imagine a future where meeting care needs didn’t remain an impossible burden for the majority of families.

While this was happening, I was meeting caregivers everywhere. I wasn't conducting a formal study, yet without collecting any data there were clear trends. The type of person whose care work experience comes out within an hour of meeting them when we're not meeting through a caregiver support program is a very different type of person from people I meet through caregiver support programs. Based on what I was seeing, the most protective thing to reduce caregiver burnout was to be a member of CouchSurfing or host people through HelpX or be the kind of person who chats with strangers on the bus on the way to the CSA pickup spot. So much for those caregiver support apps.

It makes sense that people with broad communities would be better positioned to navigate life's trials and tribulations. Loose ties find you jobs. Loose ties know things and people you don't know. Loose ties become close ties when they have the capacity and you have the need or vice versa. Strangers have rescued me countless times, in ways big and small. The sort of person who sparks a connection with a stranger on a bus or invites someone into their home is far less likely to think they don't know any other caregivers.

Going it alone is never sustainable. Not in life and certainly not in a life that involves care work. The smaller our social circle, the fewer people there are to step up. The less we tell the people in our lives about what's going on in our homes, the less they're going to tell us about their own lives. When no one outside our family has crossed our threshold in a long while, there's no one who has spent enough time in our kitchen to know our routines and step in during an emergency. As someone who regularly struggles with basic things like figuring out how to turn on other people's coffee makers and panics when handed a baby, I cannot stress how impossible it is to simply step into someone else's caregiving shoes.

The “burden” of care work is two things: being human and navigating systems. I don't imagine we can ever eliminate the challenges of grief and disappointment and accepting our limits. Nor do I think we should, even if it were possible. It's the systems that are particularly cruel. The hurdles put in place to reduce the demand for services. The damned if we do, damned if we don't government and medical systems. The way there's no enforcement for laws designed to protect us. The way the world is built as if disability doesn't exist. I'm all for eliminating those things.

Community is the most effective answer we have to both. It may seem like an algorithm would be more efficient, but so far they’re all crap when it comes to actually matching us to support compared to a nosy neighbor with a good heart. Community is how we know what help is out there. It's how we find someone to lend a hand. It's how we find a way past roadblocks. It's how we remember that we're more than just the caregiving role. It's how we can get a little reassurance that we're not losing our minds or at least they’re not lost for good. When no one in our lives knows what we're struggling with, no one offers up those solutions. I'm terrible at predicting the future. I'm terrible at predicting who will be there for me when I need them. I do have faith that someone will always be there.

---

Kaiser Health News on how to make friends at any age.

A reminder that withered friendships may be dormant, not dead.

The US Surgeon General discusses the cost of loneliness.

Is our lack of community ties the reason for the popularity of advice columns?

Building and maintaining a community has never been simple.

I generally only share things written by caregivers or that are directly about caregiving. I'm making an exception for this piece in Oldster.