11 lessons from caregiving, and other uncertain times

Three years ago, I moved back into my parents’ house for a life of daily uncertainty, anxiety, and stress.

Over those years, I collected a few lessons that I learned, a few things I learned along the way that helped me navigate through that period of my life, and given that it’s now March 2020 and the whole world seems uncertain, I thought I’d share some of them.

Depending on what’s going on in your life, the state of the world whenever you read this, and even who you are as a person, your mileage may vary. I’m no expert. These are just things that helped me.

1. Protect a block of time that makes you feel normal. Caring for someone with Alzheimer’s makes you think you might be the crazy one. Fight this.

   I went to the gym, daily. I went to the movies, weekly. These were things that got me out of the house and made me feel like I was a normal person. Obviously you can’t do this in March 2020 (or you probably shouldn’t). Still, find something that’s a hobby, or a chore that’s ordinary and requires your attention. Do laundry (without listening to the news). Tend to your yard if you have one. Go on a hike if you can. Sing in the shower.

2. Find signs of stability. Similar to #1, find signs that will prove to you that the world still spins correctly. For now, we have reports that the food supply chain is largely intact. You can still order stuff from Amazon (depending on how well they treat their workers at this time). The internet still works (I mean, you are reading this). You can order food online and then go pick it up.

   Of course, all this can change. But until it does, they are signs that the world is bending under pressure, but isn’t breaking.

   “This is not a zombie apocalypse. It’s not a mass extinction event.” -Larry Brilliant, epidemiologist, in WIRED

3. Be present. Journal. Meditate. Do something that will help ground yourself in your day to day. You’re still a human. So is everyone else. Note how you feel. Note how others feel. This is not life on pause—life still goes on.

   Your children are still growing up. Your elders are still getting older.

   Relationships still matter. They are growing closer or further apart and no virus is going to change that. You get to choose whether you and your friends/family/peers weather a storm together or not.

   I wrote almost every day when I took care of my parents. It helped me stay calm, but more importantly, it helped me realize that I get to treasure the time I spend with my parents, or I can look back on it in twenty years and wonder where the time went.

4. Prioritize, schedule, and separate your day. Make a schedule for what you’ll do each day. Depending on your personality, make it down to the hour, or just keep it a loose set of goals for what you want to accomplish. Including eating on it, because in times like these, you can forget to eat.

   I still pick a few goals to accomplish each day. Sometimes I make them very small. Learn how to correctly fry an egg in a stainless steel pan (check). Play Claire de Lune (check). Finish my novel (…one day).

   Related: Change outfits when you’re working and when you’re not. I’m not even joking about this. I wear collared shirts when I’m in work mode, and t-shirts/sweatshirts in play mode. It helps my brain.

5. Create. I turned my caregiving experience into a reality blogging series. Sometimes it was dumb. Sometimes it was poignant. Sometimes it helped others and provided some entertaining content. Most importantly, it helped me.

   In my experience, creating is the single best sign that you’re still healthy, because you can take something shitty that happens to you and turn it into something else.

   These days, I see workout trainers who livestream. Musicians who also livestream. It’s a funny time, when everyone is being a bit more raw about the content they produce and how they just want people to enjoy it.

   I started hosting a virtual game night. It’s fun.

6. Control only what you can. Not everyone is going to social distance. I tried to keep my dad about six feet from everybody and this was a long time ago, and I couldn’t even do that.

   In response, I tried to be a shield. When my dad lashed out at people, I tried to explain to them, instead of controlling my dad (because controlling people with Alzheimer’s is a fantastic exercise in futility). It’s not fair, for sure, having to constantly adjust for other people. But Alzheimer’s isn’t fair and neither is the sudden spread of covid-19. Be a shield.

   This easiest to do if you’re full of self-confidence and need little validation. Good luck.

7. Tame your news habit. My dad used to turn on cable TV news from 5pm to 10pm. Every day. Out of habit. He wouldn’t even really understand what he was watching. It killed me. Don’t be like my dad.

   In times like these (and all times but especially now), I suggest getting your news from the organizations that have been doing this for a while. WSJ. NYT. BBC.

   Look for the places that aren’t there to over-sensationalize and aren’t there for your outrage, emotion, and attention (i.e. 24-hour news). Look for places that have an editorial process before content gets published.

   Stay off Twitter. And probably Facebook, too. Unless you’re just going for entertainment.

   And at some point, turn off the news. You should probably check it more than 3 times a day given our times, but surely not once every hour.

   One simple way to combat this: Every time you check the news, ask yourself if you really learned anything new that you can take action on. The answer more than half the time will be ‘no.’

   Oh. Ignore most op-eds. That probably includes this one.

8. Appreciate the time for what it is. I need to be very careful trying to articulate this.

   Let me be clear. This sucks. Alzheimer’s sucks. I didn’t ignore that it sucked then and I don’t ignore that the world sucks right now. I feel so much for nurses, doctors, grocery workers, delivery drivers, small businesses, etc.

   This time will also end. And so will all of the beautiful things we’ve been able to create out of it. That’s fine. We should want the time to still end. I wanted my parents’ Alzheimer’s to end, which is an end in itself.

   One of these days, people will go back to working out in their special workout classes. Certain musical performances will no longer be free. People will go back to producing polished work, instead of the raw mess we have now.

   We will move on. We should want to move on. It doesn’t mean we should ignore the beauty we saw along the way.

9. Support those who need it. When I took care of my parents, I had no emotion to give others and I was probably the shittiest friend to lean on. What I could do was be generous with my money since I was living at home.

   A lot of people are going to need help right now. A lot of people already need it. Help them. Reach out to friends, family, acquaintances, people you know.

   At the very least, it’s one of those signs that the world still spins correctly.

10. Laugh. Laughter, genuine joyful laughter, I think, is the single-greatest emotion you can evoke from people. Find something that makes you laugh. Find people who make you laugh. Make other people laugh. Don’t demean the other things that make other people laugh (assuming this is again, genuine joyful laughter, and none of this mean-girls-schaudenfraude laughter, although Mean Girls the movie is definitely A-OK).

11. Be kind to yourself. Our modern world hasn’t ever seen anything like this before. It’s okay that we’re not sure what’s going to happen. It’s okay that you’re not sure what’s going to happen.

    If you don’t do anything during this time, it’s fine. You don’t have to do anything. You don’t have to accomplish anything. The point of life isn’t to earn it; the point of life is to live it. If you do nothing, you still get to live. Take the pressure off yourself.

    So go live. And in my experience, being kind to yourself, and to others, and working to make the world better for those around you, is one of the best ways to do that.