A Time to Wait: Caregiver Lessons of Simplicity

Greetings. We’re on Day 34 of isolation here. This is when a lot of those initial intentions and back-up plans start falling apart and you start to wonder what is even the point of making plans. Although the answers are not universal, please know that you are asking the right questions.

It might surprise you, but my hardest days as a caregiver had nothing to do with being a caregiver: not the day he got pneumonia and went into the hospital, but the next day, when my friends dragged me to an amusement park because there was nothing else for me to do; not the day he fell in the shower and had to go to urgent care, but the day I learned my community wasn’t there for me; not the day we fought over the yard, but the day I had to give up being an activist while caregiving.

Where there’s an active crisis, I’m the most dependable person in the room. I can keep someone calm, I can call for an ambulance, I can drive anybody anywhere in any whether. It’s part of what makes me a great caregiver: in a crisis, I find direction and move effortlessly toward it — so long as the crisis is active.

Dementia care, however, isn’t an everyday adventure. You can go weeks, even months without symptoms changing, so no caregiver goes without that moment when they see their loved one having yet another good day and think, “Did I overreact?”

“Did they really need me to take on this much responsibility?”

I don’t like to talk in absolutes, but this question is an absolute curse on one’s own mental health; it implies there’s something better you could be doing, presupposing that there being something wrong with what you are doing. At best, you get a few days of quiet ruined, gnawing on the question without resolution. At worst, you are thinking that very thought when something actually does go wrong, and you beat yourself up over it forever. “I should have done MORE!” becomes your take-away.

For a caregiver, especially when your loved one has a progressive and/or terminal disease, bad days are decline days, good days are stable days, and there are no improved days. Even if they do miraculously improve a little, you know it’s temporary, and it’s just more to lose, so how closely do you want to keep track? (Remember what I said about anticipatory grief?)

For me, my strong emotions affect my loved ones — that was always true, long before I was a caregiver. Rather than dying mad about it, I had to learn to redirect that emotional conduit to foster calm in others — I had to stay calm myself. I had to be careful how much news (especially political news) I absorbed. I had to reorient my social media and apps. I had to change the shows I watched. I had to booby-trap my own life with delights and distractions.

Caregivers have to learn to discipline what we put in our heads in order to serve others better. Some caregivers spend a lot of time reliving old memories, while others avoid them entirely. There isn’t a universal answer.

For caregivers to endure, we just have to develop our own kind of mindset and shore it up with whatever spit and silliness keeps it going.

So it is, I believe, for everyone who is not sick yet stuck at home, for we are each other’s caregivers. Maybe you’ve started to realize just how unknowable, unplannable the future is right now, but you still gotta eat, sleep, and be present for work/school/children/your new Zoom-habiting family. You’ve started to figure out that there isn’t much to figure out, so now you’re thinking about disciplining what you put into your head. Maybe it’s better to distract yourself with memories of the way life was just a couple months ago, or maybe you have to avoid them entirely — there still isn’t a universal answer.

Now is the time to choose carefully the atmosphere that you need for yourself:

You may have to be careful how much news (especially political news) you absorb. If you have to follow one kind of news for work, I strongly advise limiting what you take in from other spheres: few of us actually require daily updates on U.S. politics, global politics, celebrities, arts, business, technology, and the weather (at least there aren’t any breaking sports headlines?). Pick what you need and cut the rest way back. There are also news niches that built around positive or weird news, and those might not look so bad right now.

You may have to reorient your social media and apps. First of all, shut off any redundant notifications (I recommend this any way) — if you check Facebook every five minutes anyway, you don’t need to be reminded when it’s been three. Apps that are neither essential nor joyful can be put on hiatus — just delete or bury the icon deep in your folders; it’ll be there when you need it again. (For comparison, when I was caregiving, even Instagram got to be too intense for me, so I dove headlong into Pinterest — pretty pictures, no words, no social obligations.) And for goodness sake, if you’re still swiping on a dating or hook-up app, at least make it clear whether you’re looking to flirt, isolate together (situational monogamy?), or violate quarantine so people know what sort of bad company you offer.

You may have to change the shows you watch. You’ll want entertainment that gets you out of your head, nothing that will break your brain or your heart; I don’t know about you, but movies about zombie apocalypses or global pandemics are a little too on-the-nose for me right now. If you find yourself jumpy, cut the thrillers and try more comedies. If you find yourself bored, how about a good adventure flick (or even a bad one — who’s gonna judge?). If you find yourself unfocused, try a kids’ show. I’m serious! Some of the richest storytelling of this century so far have come in 15- or 30-minute increments.

You may have to booby-trap your own life with delights and distractions. I personally think every caregiver should cultivate a personal slideshow (screen-saver or background) for their TV or computer, to include tips for getting through tough days, images that inspire movement and laughter, and plenty of reminders about things you enjoy. (You can also print a few low-fi posters and hang them around.) Set your alarms and ringtones to favorite songs or silly gags. If you are capable of breathing yourself to calm, install a mindfulness bell app (there are several); every time it goes off, whatever you’re doing, take one big, deep breath, then go about your day. If not, go into a car or closet by yourself and sing at the top of your lungs until you’re out of breath.

And these are mostly just device ideas — anything that stimulates the senses (scented candles, tasty teas, favorite tunes…) will get you a little more out of your head and into your body. Into your body is good.

When you are thinking about form or endurance or strength, you are not thinking about hard stuff.

While you are waiting — for loved ones who might not get better or for a pandemic that’s going to drag on for an unknown time — there are other ways you can shift your mentality:

Embrace preventative care. No, you cannot prepare for every eventuality, but it wouldn’t hurt to have a back-up plan if you get sick, if you can’t get meat and eggs for a while, if your water or electricity go off. If nothing else, it gives you somewhere to direct that nervous energy, but if you’re prepared for a variety of scenarios, you become flexible and a little more prepared for the unexpected.

Think differently about debt. Many of us tend to have extreme opinions about debt: it’s either financial lifeblood or it’s to be avoided at all costs. I cannot tell you the right answer for you, but I can remind you that the economic paradigm we know is going to shift, uncomfortably, for everyone. If you are used to carrying a lot of debt, this might not be the time to go deeper, whereas if you’ve been able to avoid carrying debt remember this is an extreme circumstance and it could be there if you need it. We can’t assume we know what’ll happen, probably a mixed bag. The Great Depression was full of foreclosed homes and farms, but it was also full of penny auctions, where communities came together to make sure properties went back to their rightful owners. We cannot count on bankers to be ethical, but we can shore up our relationships with friends and neighbors and think about who has the best and worst access to capital. Don’t just think about what your own household needs right now; think about what those you care for/about might need in 3-6 months that you could provide.

Embrace the choice to leave some things behind — it’ll make it easier when you don’t have the choice. Routines, possessions, assumptions: what’s the absolute least you need to survive? What’s the most you could carry if you had to relocate? Who are three people or social institutions that you want to carry forward if all else fails you?

Do nothing, but like really do nothing. The above are just suggestions if you need something to focus on. It’s also okay to uncover wondrous new depths of the bare minimum. You’re not going anywhere. Neither is that pile of laundry. Don’t be afraid to just sit and stare if it keeps you calm, just remember to stare at something other than a screen or your eyelids once in a while.

Let other people have a different process. I shouldn’t have to explain this one. Just notice, don’t judge. Caregivers don’t have to care about everybody all the time; that’s people-pleasers.

The greatest asset for a caregiver is solidarity with other caregivers. Luckily for you, unlike most caregivers, most everyone you know is going through something similar right now. Perhaps you won’t need the support groups, therapy, and anti-anxiety meds that I did, but there’s no shame if you do because this is not normal therefore normal reactions aren’t a thing. Being able to talk about your experience with someone who either knows you or knows how to help is critical in times like this.

Quick tangent on the topic of solidarity: some people have lived like this (needing or being caregivers, social isolation, constant anxiety about health) every day of their lives; read their works, pay for their products, and start thinking about what we all can do differently to make sure society’s next reboot is less hostile to disabled people. Our collective words and actions have been full of ableism and erasure, but they don’t have to remain that way.

By now you probably realize how many of your behaviors depended on “how things are done” up there that maybe aren’t how you’d do things elsewhere. As long as you’ve got the time, why not explore other options? For the first time in our lives, our clothes, attitudes, and intentions are not framed primarily by workplace culture. These are just a few ideas, but they are grounded in the reality of caregiving — when we sacrifice for others, we are caring. If we can find ways to streamline our lives, we can smooth out some of the rough edges ahead and maybe find a little peace of mind as we go. As hard as it sounds, caregiving (like isolation) may as well be the state of preparing for the worst to happen on multiple timelines — next week, in 3 months, in a year — all at once. And still getting it wrong, because people and illnesses aren’t that predictable.

And that being okay. What else were we going to do that was so important anyway?


One thought on “A Time to Wait: Caregiver Lessons of Simplicity

  1. The Podcast “The Happiness Lab” with Dr. Laurie Santos has some recent episodes up on the neuroscience that can help us deal with the coronavirus. It’s a good podcast anyway, full of people with soothing voices.


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