To my surprise and relief, it seems people are talking about care. Mutual care, communal care, care of families, care about political constituents, self-care. At least some people are seeing what I’m seeing: We Are All Caregivers Now, and what comes after depends on how well we all care for one another now.

In my last post, I’d promised to talk about some of the skills in isolation and working from home that I’ve picked up as a grad student; I started that project, but decided it was not urgent. There are plenty of other posts out there giving generic tips, but only a handful suggesting we could maybe stop worrying so hard about productivity, what with the global social and economic collapse and all. If ever there were a time to adjust our expectations and assumptions, this is it…

(If you really want those tips, here are some I haven’t seen elsewhere: hold your breath slightly longer than is comfortable to ease tension — only slightly; too long ramps up anxiety — start your expectations low and slowly build them based on observation, learn how to set your posture but move around often, and play to your weaknesses before your strengths — instead of assuming you can avoid un-productive time, plan for it.)

Putting things in a caregiving context has helped me; I felt like I was getting into a groove as friends started getting sick and/or losing hope, my family needed logistical and emotional support, etc. The last few days got unexpectedly hard for me, though, and I had to face some uncomfortable truths: it’s easy for me to drop back into caregiver mindset, but hard as ever to leave again. I’m going to have to work on that, and I doubt I’m alone.

Lessons from Dementia Caregiving

When you care for a person with dementia, you learn about this concept of anticipatory grief: you are watching the loss of your loved one long before they actually pass away, and it can be just as destabilizing as grief from actual death; one article I found specifically links anticipatory grief and impaired decision-making, meaning that the process of mourning someone who isn’t entirely gone makes it hard to approach real, evident problems before us.

Sound familiar?

I have often likened caregiving to anti-virus software running in the background of an older computer, running constantly and slowly accumulating resources until one day you realize it’s locked up a third of your computing power. Caregiving isn’t malware, but it does have a knack for taking everything you give it and needing more. Some of this is because caring gets prioritized in our brain — we care because we care — and some of it is because caring gets de-prioritized in our society — we don’t care because there’s no gain. Researchers have studied interpersonal “role conflict” — when the child becomes the parent, for example — but I haven’t seen any academic measure of the societal role conflict that comes with detaching from the traditional, 9-5, putting-on-slacks-and-commuting, bringing-home-a-paycheck employment lifestyle. There are studies into how caregiving affects employment (and, to a lesser extent, vice versa), but it’s usually stress measures and financial impact. How does it feel? Well, there’s no funding for such questions.

There are other reasons caregiving can be traumatizing; some are particular to dementia (the feeling that you’re starting to live two lives or the dread the first time they confuse you for someone else), while others (such as the rise in family conflict or the loss of sleep quality once you’ve trained your mind to listen for anything out of the ordinary) are more broad. Either way, that “background software” keeps grinding, never relenting, always seeking out new threats, until eventually your body loses its distinction between calm and urgency — you start to approach everything as life-threatening. I would imagine with temporary care, a good recovery makes one feel redundant — did I need to be here at all? With dementia and other terminal conditions, though, you’re witnessing a sometimes long and slow decline, knowing full well the person will not recover; there’s no benchmark for “doing enough”, yet you still fret over not doing too little, so you’re constantly judging yourself on metric that can only move in one direction.

Some of us, through instinct or knowledge or the culmination of adolescent pessimism that never quite got permission to go away, we suspect that we are watching something terminal around us. Bigger than anything seen in four generations, at least. Nothing that big changes without loss, but like a dementia caregiver we may not know what symptom will hit on which day. We know we’re going to lose something, but not what or when, nor what more we can do.

Anticipatory grief is about knowing someone will die, or something will end, some day, but not when or how or what more you could have done…

There’s only so much one can do for anticipatory grief: try to find acceptance that the loss will happen, celebrate the “golden moments” you have along the way, strengthen your ties with others who are grieving or supporting you, and try not to get attached to details that may be irrelevant in six months (you’ll have a future, almost always you’ll have a future, but you won’t really be able to see it from this far away).

It sounds simple, but at heart the process of caregiving — especially when you’ve never cared this hard before — is one of re-purposing yourself. Whatever metaphor you need: renovating a house, customizing a sports car, revitalizing a sports team, updating a brand… do this for yourself and, through your own chrysalis, hope (but don’t expect) to do the same for the world.

Lessons from Sociology

Sociology has shown me that most of learned human culture can be traced back to the interactions of three simple concepts: economics, population density, and habit. Property and income (economics) give context to motivations and labor, concentration of people (population density) gives context to specialization and generality (the more dense a population — or urban — the more interdependent and specialized their roles), and precedent or tradition (habit) gives context to patterns people keep long after their motivation for it has waned or been forgotten. What we witness each day as we fixate on the latest news, the strongest cleaning methods, the deepest distractions, is that these three facets are in flux: the economy is being upended, density is the heart of social distancing (don’t be surprised if there’s a rush to move away from cities in the coming decade, even though rural areas face even greater challenges fighting the virus), and a lot of old habits just aren’t making much sense now that we have time to think about it (for example, in the next 20 years or so, one or more national holidays may be shifted away from exalting 20th Century war heroes and toward COVID-19-era icons — healthcare workers, janitors, delivery personnel, perhaps — instead).

As individuals, we have no control over all of that, and yet it is the individuals who make up the collective. So if ever there were a time to “Be the change you want to see in the world”, this is it.

Enough Theory and Metaphor, What Can I Do about It?

Rewriting your approach to life can be difficult because it is too simple to conceptualize — it’s like telling yourself to fly by simply pulling your feet away from the ground: if you hold onto a handful of simple concepts and don’t get creative, change will seem impossible, even mocking.

Below, I offer are some caregiving-inspired tips on how to shift your mindset for the rest of isolation and beyond. Don’t worry about becoming irrelevant; if somehow the old paradigm reemerges unchanged, social forces will revert you back into the old ways with much less effort.

• Do what you do for someone else. It has been suggested that the “sixth” stage of grief is “finding meaning”, so instead of thinking about what assumptions never felt right in your life, think about what opportunities and sensitivities you want young people to grow up taking for granted. Anything that is not in the interest of the person(s) you serve is no longer in your interest, either. But by the same token, sustain your wellness to better serve them.
• Stop structuring your life in ways that used to make sense. To the best of your ability, let your body give you some ideas when you want to sleep, eat, and exercise; be productive when it feels best (or when you’ll have the fewest interruptions — and don’t pretend you won’t!).
• Don’t take a wrecking ball to your whole worldview all at once (unless something beyond yourself has already done so, in which case own it and find a good e-therapist). Start with the smallest idiosyncrasy, look to someone who seems unbothered by it, find out why, think about how you’d do it differently, and let that line of inquiry build around you.
• Make room to process, to grieve. Your thoughts will be muddier in a few weeks, so start while you’re sharp: regular phone calls, journaling, thorough check-ins with a partner/friend/therapist, anything to help you organize all those heavy thoughts and feel less alone. If at all possible, create space to relax your whole body: dancing, exercise, meditation, prayer, anything that works. Rest. Rest. Rest.
• Don’t talk to the same old people about the same old things and expect anything to change. Find a new interface, a new community, particularly with people who are experiencing similar losses (luck you: that’s just about everybody right now!).
• Be generous with your resources and jealous with your energy (or vice versa if you have nothing to give), because support networks don’t deplete in the same ways personal stockpiles do.
• Don’t pretend you have any idea what’s coming, don’t beat yourself up for what hasn’t happened, and don’t deny the severity of the situation. Don’t give inordinate time to anyone else who does. This is “the big one”, so if you’ve ever put something aside for “just in case”, this is that case.
• Find and celebrate your joys. Encourage others to do the same. You’d be amazed how much time and energy (and friendship) we put into shared dislikes. Who is around when you feel delight? Especially invest in the people you count on, or who count on you; it’s not enough to love each other enough to endure, you need to still be able to like each other when it’s past.

Above all, I guess, just pay attention. Our bodies can tell us a lot if we slow down and check in, but when we ignore those signals they just stop bothering to tell us. (Do you want adrenal fatigue? Because that’s how you get adrenal fatigue.) Our loved ones are having to rediscover their voices in all this, too, and for many of us that may be something we can work through together. Some of these suggestions require you to anticipate this situation lasting forever, while others require you to live for today alone. That’s caregiving: being prepared for both eventualities, because all you have now are moments and emergencies, and the moments will heal you once the emergencies end.

The end was never like this in the movies, with groceries and restaurants still delivering, phones still working, cars sitting idle but available… We can tread water through this Slowpocalypse or we can watch the currents and learn new ways to swim.

It’s going to get worse before it gets better, but many of us have already been down that road. We might be exhausted, but we needn’t be afraid. Caregiving transformed my heart, made me a more open and attentive person. But I did not do it for self-improvement: then, as now, the people around me deserved my best and I wanted to share it with them. Who are we without conflict, without profit, without plans? Who does that make us, really? Who could we be as a nation, as a world, if we were all devoted to caring for others?

I continue to hope for a resurgence of care values; in the same way the Great Depression reminded folks that any of us could become poor or that World War II reminded folks any of us could become oppressed, the months ahead will remind us that any one of us could become sick. You. Me. Us.

I’m not afraid of being sick, though, as long as I’ve got someone(s) around who is willing to help me get through.