The caregivers are not all right
The emotional dynamics of dementia care đ
Hello Prox Populi.
Last year, my friend Brian Reed (host of Question Everything, S-Town, The Trojan Horse Affair) told me he had a problem. Brian lives with his mother-in-law who has Alzheimerâs, and he couldnât stop fact-checking her and losing his patience â even though he knows sheâs losing her memory.
This might have something to do with the way Brianâs brain is wired as a reporter. After all, he makes a show about what the heck is going on with journalism in these misinformation-addled times. (Question Everything is excellent, by the way. Entertaining, smart, sometimes tipsy. Highly recommend the ep where Brian meets his harshest critic, and the two-part series about the first American journalist arrested by Israel.)
But Brianâs frustration probably has more to do with the fact that caregiving is just really hard.
Nearly 12 million Americans provide unpaid care for a loved one who has a neurodegenerative disease, and according to the research, these people are not doing OK. Theyâre more depressed, burned out, and anxious than the rest of us. Theyâre skipping doctorâs appointments, not seeing friends, not taking breaks. Somehow, we still havenât come up with good solutions to support people with cognitive decline and their caregivers.
So we went searching for a proxy for Brian and came across acceptance and commitment therapy (ACT), a kind of cognitive behavioral therapy thatâs actually been studied to see if it can help with dementia caregiver burnout and depression. Initial evidence has been promising.
We also found Claudia Drossel, a professor of psychology at Eastern Michigan University who specializes in improving the relationship between people experiencing cognitive decline and their caregivers. Decoding the feelings of both caregivers and care recipients is critical to getting unstuck as a family, she told us.
âA WHOLE REARRANGEMENT OF YOUR LIFEâ
Below are some insights Claudia shared in this weekâs proxy conversation with Brian.
And if youâre looking for more, we went in depth in our bonus episode with Claudia. She shared advice that will resonate with anyone thatâs a human, not just caregivers. Join our Patreon starting at $5/month for access.
On the lack of acknowledgment of caregiving in our society
It's almost as if there is the secret within our society that a lot of people will be affected by cognitive decline. Nobody really acknowledges it, nobody prepares you for it. But then when you find yourself in the situation, everybody says to you, âWell, if you just did X, Y, and Z, then it would be okay.â And everything rebels against the âif onlyâ because you know that that is not true. It's not like, âIf only one thing.â It's a whole rearrangement of your life that is happening. When you think about it, it's almost like a murder has been committed and there is kind of no corpse, and you are the one who is saying, can't anybody see just how incredibly fucked up this is?
On remembering that caregiving is not all or nothing
Caregiving has a lot of different kinds of aspects. And you can be a caregiver who does direct care. You can be a caregiver who checks in with people. You can be a caregiver who just monitors and supervises or manages. ⌠There's a multitude of ways that you can actually show caring for somebody. And the question is, what is actually right for you? What is it that you would like to do? And what is it that matters to you
On why itâs important to figure out what is tenable for you as a caregiver
A lot of people start caregiving [for an elder] because of a sense of duty or obligation and at the same time, people are not prepared that caregiving can be longer than caregiving for a child. Part of what we need to do is figure out how sustainable things are in the long run.
READING (& LISTENING) LIST FOR CAREGIVERS
Claudia assembled these resources for our listeners interested in learning more about dementia caregiving, caregiving in general, and acceptance and commitment therapy (ACT).
On the landscape of care, historically and to the present day
Forced to Care: Coercion and Caregiving in America by Evelyn Nakano Glenn
The Insiders as Outsiders: Professionals Caring for an Aging Parent by Robert M. Kaiser and Susan L. Kaiser
It Shouldn't Be This Way The Failure of Long-Term Care by Robert L. Kane and Joan C. West
Families Caring for an Aging America edited by Richard Schulz and Jill Eden
On care experiences
The Shape of Care (podcast)
On understanding dementia
Dementia Reimagined: Building a life of joy and dignity from beginning to end by Tia Powell (and this accompanying Fresh Air episode)
On preventing/addressing emotional or behavioral changes associated with dementia
When a Family Member Has Dementia: Steps to Becoming a Resilient Caregiver by Susan M. McCurry
On acceptance and commitment therapy (not specifically related to caregiving)
Get Out of Your Mind and Into Your Life The New Acceptance and Commitment Therapy by Steven C. Hayes
The Happiness Trap: How to Stop Struggling and Start Living by Russ Harris
PROX VOX
Latest Patreon stats: Weâve got 370 paying members out of the 3000 we need to keep making the show. For those of you following along at home, since last episode, thatâsâŚ
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On the fence? This week, our Patreon members got a bonus episode with our proxy Claudia Drossel, an ad-free episode, the satisfaction that theyâre supporting indie media and emotional investigative journalism, plus access to our entire library of bonus episodes AND the chance to star in a Proxy skit.
About that: You might have noticed that weâre featuring the voices of our esteemed and very charming Patreon members on the show. We do this after the first break and in the credits.
I love getting to play with listeners in this way and personally find these Patreon promos more fun to listen to and make than when itâs just lonely lil me.
If youâre a Patreon member and would like to make a promo with me, get in touch! You can reply to this email. The Proxy team would be so grateful. I promise, itâs fun.
(FINALLY!) MERCH
Exciting news for all my criers: We are dropping our first merch just for you. A cry rag I designed to look like an actually cute bandana you can wear on your head or neck, but can immediately transform into a reusable hankie for your tears!
My friend Lauren Passell put together a special box of goodies for her Podcast the Newsletter, featuring merch from Judge John Hodgman, Everything Is Alive, and yours truly.
Hereâs the deal. Thereâs only a limited number of cry rags and boxes being made, and we also need enough people to preorder by July 6th for these bad boys to get made. You can order here.
Your emotional investigative journalist,
Yowei
Edited by Juliana Feliciano Reyes