Breaking free of old approaches to caregiver support

Recently, an article in TIME magazine has been getting a lot of play, and it’s bugging me.

The thesis seems like something I should be 100% behind: we need to stop asking caregivers to tell us what to do, and stop telling them to stay positive, because it adds to their burden. Instead, we should just do things — like dropping off supplies, or sending texts with explicit “no need to respond” endings.

I really don’t want to critique this article or the author. The experience is genuine, I agree with all of the analysis, and the tactics above really do work. Articles like this get under my skin, however, because the call to action is flawed: asking the majority of the population to behave differently is an exercise in futility, and it’s what many caregiving articles have (unsuccessfully, in my opinion) tried to accomplish. The author has been through hell and society has failed her and many others on countless occasions. I wish we could just tell people to act differently, and get the outcome we want. We need to be honest, however, and concede that behavior has changed. If we are going to deal with the expanding caregiving crisis, we need to exploit new behaviors, not fight them.

Let me explain the change I see through a retail lens:

2000: I would love to buy your book, but (it’s 9pm and you’re closed / you don’t stock the ones I like / it’s kinda far away / I don’t know which one I want).

2021: I would love to buy a book, so I will get it on my kindle, buy it and read it right now.

Retailers used to be able to tell consumers how the business worked, and expected them to adjust their spending patterns. Now? The best businesses adjust to consumer behavior, capturing many more purchases in the process. Even niche businesses now expand online and access many more customers (heard of Shopify? Etsy?). The consumer and the business both have roughly the same needs as they did in 2000, but the approach is almost unrecognizable.

So what about caregiving? How has this core piece of the human experience evolved? Have we sought to make it easy for the masses?

2000: I would love to help out, but (I don’t know what to do or say / I think I’ll just get in the way).

2021: I would love to help out, but… why isn’t this easier? Shouldn’t there be an (uber / amazon / airbnb) for this? I still don’t know what to do.

In 2000, the funnel for support was crappy, but communities were tighter, and the health systems less overwhelmed. In 2021, we are still using the same crappy funnel and the problem has gotten bigger. Caregiving is stuck in brick and mortar mode — we need to get to e-commerce, marketplaces, on demand and all the other things that make it awesome to be a consumer in 2021. It should be awesome to be a supporter, too!

So, while I agree that asking a caregiver “what can I do?” is counterproductive, I think articles explaining how to be a better supporter aren’t helpful either — that’s advice for a 2000 world, and it’s mostly reaching people who don’t need it. Have taxi lobbies succeeded in convincing people to come back because Uber is stealing their market? They are asking people to change a behavior that makes sense for them — a ubiquitous experience, that is more convenient, usually better and often cheaper. The lobbying approach has been like shouting against thunder, and the people listening already side with taxi medallion holders — it hasn’t been effective in changing the behavior of most consumers. When the average person sees a caregiver who needs their support, they don’t have a better, cheaper, ubiquitous tool. They fall back on trying to be nice and accept that the best they can do is send a text, offering their love and support.

Let me say a tough truth to caregivers — we love you, but we can’t read your minds, especially now that we get information filtered through Facebook and Instagram. When you first got the diagnosis, you had to spend days on Google before you knew your way around your loved one’s disease — is it surprising that your friends are looking at your situation with confusion and trepidation? I’m not suggesting that we tell caregivers to take on more responsibility and start behaving like project managers — instead, I believe that our systems need to catch up so no one needs to be confused. Much like Uber doesn’t care if you know where you are, Amazon doesn’t care if you don’t know what that thingy is called that you need — “Stop draft around door” gets weather stripping to your door in under 48 hours. Companies like Amazon and Google have made it possible to be effective without expertise, and when you can’t find the right words.

What if we could do these things for caregiving? What if we could understand that the person saying “stay positive” is the same person that would make dinner if we just told them to? And that the person on the other side of the world is just as willing to support as the next door neighbor? And that a caregiver whose GPS has been at the hospital for 6 hours, or is talking about how busy their day is, probably needs dinner tonight, but hasn’t thought to ask for it?

We can get so much more out of people who are currently on the sidelines, but we’re busy proselytizing when we need to be enabling. Telling people to “just show up” is stunningly ironic, given the generally accepted critique of “what can I do?” — neither sets the stage for success. We’ve created a stalemate where both sides simply expect the other to lead the way. We need to take a page from retail and focus our energy on one thing: conversion. If needs become requests, and offers become actions, we will be in a better place.