Who's missing when we talk about care work?
Also: Medi-Cal, newsletter overwhelm, and my incredibly boring fantasy life
One of the groups that's missing from conversations about care work are people caring for someone whose abilities have been altered by a gun. There are a lot of them out there, yet they’re not represented in caregiver support groups or media coverage.
From Kyle Westaway:
“Gun violence recently surpassed car accidents as the leading cause of death for American children. Nineteen percent of deaths for children ages 1–18 is due to a gun. The gun-death rate for children is nearly five in every 100,000.”
Deaths are easy to count. It's the impact on people who survive that’s harder to quantify. Given the number of incidents each year and the fact that many survivors go on to live for many more years, there are a lot of people who are being left out of the caregiver community and conversations about care work.
We hear a lot about caring for people with certain conditions. These are typically the ones with powerful, well-funded advocacy organizations. I’m glad there are organizations to build awareness, push for research, and create support programs. Let’s not let that take over the conversation about care work. There are so many people who are caring for someone who doesn’t have Alz or cancer or some other brand name diagnosis. They belong here, too.
Who have we left out from conversations about care work? How do we make space for them? How do we make this community more welcoming? What parts of your own experience do you not feel comfortable discussing?
Feel free to hit ‘reply’ if you don’t want to comment publicly.
Can something be shocking without being surprising? That’s how I felt reading this piece from Alice Wong, who’s dealing with things that will feel familiar to many of you.
“The discharge planner said that a person like me with my disability and new care needs who is on Medi-Cal, California’s Medicaid program, should consider going to a subacute nursing facility unless they had family support 24/7.”
It's amazing that this is just the way it is. It’s absurd that this work (and the coordination of paid care work) falls on patients and families.
Right after reading this I saw a post on Facebook where someone had found an injured dog and was trying to find help for it. They’d contacted animal services and were told they could either surrender it to animal services and it would be euthanized or they could take full responsibility for it. There were no other options. It’s not right for dealing with abandoned dogs and it sure as shit isn’t how we should deal with people.
The family members of people who need care shouldn’t be put in the position to make that sort of decision. It’s unjust to everyone involved and creates inherently toxic family dynamics.
Anne Helen Peterson wrote about a no-baby baby shower and I love the idea of having celebrations (and gift giving) for more turning points in life. Can we have gift registries for when someone has survived a major surgery? Or just got a diagnosis? Or is switching treatment protocols? Those are times when we need friends to show up for us. If we can gift each other specialized equipment and adaptive clothing for kids, why not at other times? Let’s celebrate the continuation of life and the changes that come with it.
When I first joined The Caregiver Space, one of our regular features was fitness videos specifically created for busy caregivers. I don't do video, so that fell by the wayside as the team grew smaller. Someone suggested this series of videos for maintaining flexibility and movement routines that's made for beginners and those with slight mobility limitations.
The other week I unsubscribed from a zillion newsletters and mailing lists and went back to using an RSS reader. I knew that the avalanche of emails hitting my inbox was stressing me out, but I didn't realize how big an impact it was having until it was gone. If you, too, would like fewer emails, you can unsubscribe and keep reading by adding thecaregiverspace.substack.com to your RSS reader.
The gmail unsubscribe feature is very hit or miss with Substack and some other mail services, which is super annoying! If you don't want to get emails from me, just hit reply and I'll make sure you get taken off the list for real. Feel free to let gmail know that their unsubscribe tool isn't working so hopefully they'll fix this bug.
So many caregiving blogs are no longer active. Please keep sending me suggestions of your favorite blogs about care work.
Once you see it, you see it everywhere: the patronizing way we discuss the elderly.
“I thought about the times I had pointed out to a person they were insulting me or the times I had written that the unconscious setting of the insult toward women was guiding human society with a broken compass. I thought about how seldom I had actually said any of these things in order not to sound like a nag and a drag, and also because I often experience a delayed reaction between the insult and knowing it’s happened.”
I have become that drag who tries to gently point out ableist language (it’s everywhere!) and ask people to rethink calling the elderly “cute.” I conjure up memories of times people have given me feedback on my language usage without shaming me and remember how grateful I was that they’d saved me from accidentally insulting people. I try to channel that energy. So far no one’s unfriended me for doing it.
You can hire a bot to negotiate your cable bill. Maybe you can. It seems like one of those things that generates headlines before it actually exists. Hopefully soon there will be a bot to negotiate insurance claims and medical bills. Or, even better, there will be no bills to negotiate.
In Portugal it’s so difficult to get through to certain government offices, where people are required to schedule appointments to take care of essential tasks, that it’s become common to use autodialer tools. If enough people are using autodialers, it’ll overload the system and crash it, which is how denial of service attacks work. They also have a thing where attorneys act like ticket scalpers, using bots to scoop up all the appointments so they can then resell them (aka force people to become their clients in order to fulfill legal obligations they should be able to do without an attorney). It’s a mess. A system that wasn’t user friendly has led users to use tools that then break the system. I’m sure you’ve encountered something similarly self defeating, wherever you currently are in the world.
In my fantasy world, using bots against bots for billing issues will force companies and governments to provide tools that humans can actually navigate without autodialers and legal bots.
Yes, I agree that I should probably be fantasizing about something other than bureaucracy.
Another quote from Anne Helen Peterson:
“We know, for instance, that the current way of organizing society is not working. There is a generalized mismatch between the care needed and the care we are able to provide, which results in a whole lot of coerced (and ultimately deeply fraught) care. The path to societal stability demands crippling amounts of debt that lock people in jobs, relationships, and situations that make them miserable.
Most people want a softer, kinder society that acknowledges, values, and cares for the most vulnerable amongst us, but find it difficult to impossible to resist the wheels of commerce that incentivize the sort of behavior that ignores or invisibilizes their needs.”
Denise Brown reminds us that part of why hospitals are beyond capacity is that they can’t discharge patients because of the shortage of (paid and unpaid) care workers.
Care workers aren’t the only ones who have little control over their lives…and who can’t strike.
Feel like you’re being pushed to get someone else to comply with doctor’s orders? Frustrated that the treatment team won’t deviate from general guidelines? MIT has found that doctors and their families are less likely than the typical person to follow standard medical advice.
Caring Across Generations and Better Life Lab have collected the year’s 10 most moving caregiving moments on TV.
The Twelve Days of a Caregiver's Christmas are spot-on.