Click the Listen now or PLAY button above for the episode. If you’re looking for the full memorial, I’ve posted the video at the bottom of this newsletter.

Read Diane’s obituary:

https://evanstonroundtable.com/2025/05/30/diane-eickhoff-feminist-historian-dies-at-81/

Diane’s memoir, in flipbook form:

Volume 1, “Origins”

https://online.fliphtml5.com/pxuup/oymz/

Volume 2, “Growing”

https://online.fliphtml5.com/pxuup/ckci/

Support the Lewy Body Dementia Association:

https://www.lbda.org/donate/

Jim Croegaert’s music:

https://roughstonesmusic.com

Slideshow music: “Water Droplets on the River” Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

The Kansas Day series is available as a podcast.

Subscribe where you get your podcasts so you don’t miss Season 2. Or click the button below to get it via thedianeproject.com. I’ll send you “What Every New Cognitive Caregiver Should Do.”

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Gifts in Diane’s memory can be made to the Lewy Body Dementia Association.

This essay was originally posted in three parts on Substack. The audio versions have been combined here for your convenience. Includes an announcement about Season 2 of The Diane Project.

Substack versions:

This is Kansas Day (Part 1)

This is Kansas Day (Part 2)

This is Kansas day (Part 3)

The Substack versions include links, images and videos.

Subscribe to The Diane Project on Substack and you’ll get my free guide, “What Every New Cognitive Caregiver Should Do.”

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Here’s the entire “Kansas Day” story as a single podcast:

This story was originally posted to Substack, where you can get bonus content and discuss with Aaron and other readers. To listen to parts 1 and 2, subscribe to the podcast.

Here are the Substack versions of this series:

This is Kansas Day (Part 1)

This is Kansas Day (Part 2)

This is Kansas day (Part 3)

Final part of an essay on my wife’s midlife reinvention. Here’s Part 1. And here’s Part 2. Rather listen than read? Click the audio widget to hear me reading the “Kansas Day” series, all three parts.

***

It’s a blustery early spring day in Chicago but as soon as I click on the video, I feel warmer. I’m transported to that summer night in 2003 outside a charming old house in Topeka. The house belongs to Ron and Annette Thornburgh, one of the more prominent couples in the capital city of Kansas.

There are people standing in clusters chatting pleasantly on the Thornburghs’ front porch. The video footage is unsteady. I’m on the lawn trying to figure out my new camcorder, which has more buttons than a Shakespearean costume. As I take a few shaky establishing shots, I hear a woman’s laugh above the chatter and think: I know that laugh.

Inside the house, people are holding drinks and talking in groups. Moving among them is a tall, friendly lady in a black dress whose badge identifies her as Marion Cott, director of the Kansas Humanities Council. These are her people — donors, board members, allies in government. Originally from Iowa, Marion has spent 30 years building the KHC into a force for good in her adopted state, promoting civic values and lifelong learning. It awards dozens of grants a year in support of small-town and rural-friendly projects: oral history, film festivals, educational talks.

KHC’s big initiative in 2003 was a traveling exhibit titled “Produce for Victory: Posters on the American Home Front.” But tonight is about a much more ambitious project that’s launching next year. And like The Diane Project, it has my wife at the center.

Since the 1980s the KHC has sponsored the Kansas portion of the Great Plains Chautauqua, a five-state road show that mixes enlightenment with entertainment. A traveling band of scholars give talks during the day and perform as historical characters — Sacagawea, Teddy Roosevelt, etc. — at night under a big top. To mark the 150th anniversary of the Kansas-Nebraska Act in 2004, Marion wanted KHC to have its own chautauqua. This one would shine a light on the often-overlooked role that Kansas played in the leadup to the Civil War (as I described in Part 2).

Diane applied for the part of Clarina Nichols, and despite her lack of scholarly background or acting experience, Marion picked her. And tonight she’s starring in a VIP preview of the 2004 Bleeding Kansas Chautauqua. We’re doing it at the home of the Thornburghs because Annette is on Marion’s board and is married to the Kansas Secretary of State. (Ron was elected to four consecutive terms as a moderate Republican, back when those creatures roamed the earth.)

You would never know this is Diane’s performance debut. There she is on the front porch, minutes before showtime, just yakking with folks like it’s a charity event for Saint Francis Hospital in Evanston, where she was director of public relations in the ’80s. All of her familiar qualities are on display: her smile, attentiveness and good humor — but what people probably noticed is the incredible 19th-century period costume she has on. The wig was designed with the ringlets that Clarina wore in her hair. The dress, inspired by New England styles of the day, was made for her by a Lawrence quilter and dressmaker.

Once everyone goes inside and is seated, Diane is introduced by Marion, delivers a half-hour monologue crafted from Clarina’s own writings, answers a few questions as Mrs. Nichols, then takes off her wig and answers questions as Diane. This cutdown is 15 minutes long and worth a watch.

The Bleeding Kansas Chautauqua kicked off in Junction City the first week of June, 2004. Most of our family attended that one. Next was dusty Colby, way out west, then historic Fort Scott in the state’s southeast corner. The finale, which played to the biggest crowds, took place in Lawrence’s South Park, near the University of Kansas.

Each site was treated to five nights of performances. College professors Fred Krebs and Richard Johnson debated amicably as Lincoln and Douglas. David Rice Atchison and John Brown (aka Dave Dickerson and David Matheny) each got his own night. Charles Everett Pace breathed fire into Frederick Douglass’s Fourth of July address.

Diane’s performance in Lawrence was memorable, and not just because the tent was filled to capacity. In the audience was Janice Parker, a direct descendant of Clarina Nichols, whose grandmother Diane had interviewed for her book (and who told Diane that her name was Clah-RIH-nah, not Clah-REE-nah). Janice brought a very special heirloom with her — the brooch that Clarina wore in the 1843 picture that I featured on the cover of Revolutionary Heart. Diane wore it for her performance that night.

The book came out in 2007. With support from the KHC, Diane kept doing her one-woman show. The demand seemed endless. It was not easy for Diane to put on a period outfit, perform a script from memory, and take questions from audience members she couldn’t see because of her poor vision. I’ll bet she did it at least a hundred times.

Had Marion Cott not retired and the KHC put an end to the Living History program, Diane would probably be performing in that wig and dress until her diagnosis. (Well, she probably wouldn’t have made it quite that far, but that’s a story for another day.)

Instead, armed with her new master’s degree and the tools of historiography, she went into the history business. The humanities councils in Missouri and Kansas wanted relevant talks on history. The pay was enough and we could sell books afterwards. Over the next 15 years we covered most every highway in two states.

Diane gave different talks over the years, but they always had something to do with women’s struggle for basic rights or the roles of women in the Civil War era. These topics were not only novel and interesting to her audiences, but gave Diane an excuse to work Clarina Nichols into every single talk.

After I left the newspaper in 2012 we became a writing-lecturing team, leading Osher Institute classes, addressing Civil War Roundtables across the Midwest, and appearing on C-SPAN. We published books on local history and women in the Civil War, and were working on our most ambitious book project when it all came to a sudden stop in 2020.

It was Lewy, not Covid, that put us out of business. Diane’s diagnosis forced us to drop everything and pivot to downsizing and moving. We never gave another talk and we shelved our work-in-progress. By the time we arrived in Evanston in 2022, Diane had forgotten that she was the one who had given Clarina Nichols her place in history.

But it turns out there was someone in Kansas who hadn’t forgotten Diane.

***

I received this email out of the blue last November:

“Hello, my name is Phyllis Pease and I am the artist that is working on the Kansas suffragist memorial. Clarina is front and center of my painting and in my sketch I have her wearing the memorial brooch. Would you happen to have a better photo of it.”

Having no idea what this “suffragist memorial” was, I searched online, and learned that it was a project of the Kansas League of Women Voters, at whose convention Diane once spoke. The legislature had passed a bill allowing for a “memorial” — actually an 8-by-19-foot mural — to be installed in the Kansas Statehouse in Topeka to commemorate the 100th anniversary of the 19th Amendment. Kansas women had actually gotten full suffrage in 1912, eight years before the passage of the 19th Amendment.

The mural would be painted by Phyllis Garibay-Coon and would be on permanent display on the first floor of the Statehouse, on the same wing, two floors down from one of the most illustrious murals in America: John Steuart Curry’s “Tragic Prelude,” famous for its 20-foot-high, hair-on-fire portrait of the abolitionist John Brown.

I could only find an early sketch of the mural, titled “Rebel Women,” but there was Clarina front and center, holding a lamp, leading a legion of suffragists whose work, as I knew from Diane’s talks, had spanned six decades of Kansas history. It had the feel of a traditional, overstuffed historical mural with a bit of comic-book flair. But it also had a special quality. It seemed so … joyous. Even in rough-draft form, it made my heart leap.

Tears welling up, I sent Phyllis the photo I posted above, the one of Diane wearing Clarina’s brooch. Phyllis wrote back:

“Oh my gosh Aaron this is a great picture! Thank you so much for sharing this with me. I’ve read all of Revolutionary Heart. I think Clarina is an amazing woman, and if I could go back in time that’s who I’d want to meet.”

Now I wanted to know all about this mural and the woman bringing it to life. So I got Phyllis on Zoom with Diane. Here’s an edited version of our interview. We started off talking about surnames.

Why did you introduce yourself to me as Phyllis Pease when you’re signing your painting as Phyllis Garibay-Coon?

I got divorced several years ago, and I haven’t officially changed my name back to my maiden name. Because it was in the Statehouse, and my parents are Kansans and [my ex’s] family is from Nebraska, it just kind of prompted me to like, “I want to honor my families.” I wanted to honor both my parents because they went through a lot to be married.

It was a mixed marriage. My mom’s Mexican. She emigrated when she was a child from Michoacán. [Her family] ended up in Kingman County. They both came from farm families. He’s German-Scotch-Irish. They moved from Illinois. That’s the other thing. It was a mixed marriage because my mom was Catholic but my dad was not.

My mother passed away several years ago but my dad’s 100. He’s still alive and kicking. Really a wonderful story of these two people that met and got married and had 10 kids and farmed. My mom was the fire, my dad’s quiet. Every day he asks my sisters, “How’s the painting going? What’s going on? So excited for Wednesday!” That’s why I changed [my name]. I'll start signing my art that way, too.

(I then told Phyllis that my wife grew up on a farm as well, near Wykoff, Minnesota. “She’s an Eickhoff from Wykoff!” I said, which got a laugh from both Diane and Phyllis.)

How did this project come about? How was it commissioned? And how were you commissioned?

The League of Women Voters and the AAUW. It all goes through the State. But it’s all privately funded. The League of Women Voters made the proposal, and they were granted the space. They put the net out for artists. They wanted Kansas artists.

I've done a big [MLK] painting at the Zoo here, Sunset Zoo, and I have a painting [of Dolores Huerta and Cesar Chavez] at Kansas State University. I love to paint big and it’s kind of nostalgic-inspired.

I had not heard about this project. I don’t know how they advertised it, but not well enough because they didn’t get enough input, so they extended the deadline. A woman came into our small business — [my daughter and I] have a little bakery and a restaurant — and said, “Hey, your mom should do this project.” So I applied, and they narrowed it down to five artists. And then each artist had to present their idea.

They gave us a list of 20 [suffragist] women, and there was a snippet on each one of them. Of course, Clarina is on the first page. So I read Revolutionary Heart. I mean, after I started reading about Clarina, I said, “Oh, she’s a freaking superhero.” She is the one in front and center.

There was a guy who teaches at KU and he’s like a heavy hitter and I’m like, “I can’t believe I’m up against this dude.” But he’s a dude, and the League of Women Voters were like, “You know, we really want a woman to paint this painting.”

I got a peek at some of the other people’s ideas. They kind of focused on nationwide suffragists, a general story as opposed to Kansas women.

Ohhhh, big mistake!

Yeah. So I did the research.

The Preservation Committee chose me to be the artist, with changes. They didn’t have a problem with my composition or what I had in it. I have Lawrence burning. I had the territorial capital [Lecompton], the border wars, because Clarina’s sons fought in the border wars. So that was great. And I said, “OK.” I was a graphic designer. That’s what I graduated as and worked as in a firm. So I understand design-by-committee and I expected there to be some changes. We worked together to choose the women, but they always wanted Clarina to be be featured in the project.

There are at least three dozen women in this painting. Is there going to be an explainer?

There’s a plaque that will sit underneath the painting and there will be a key that will number left to right. Each of the suffragists will have their name, what town they were from. And what’s cool is, these are people that existed in time.

They have hundreds of kids who come through there every day. And their teachers. The tour guides are so excited. The tour guides — I was just there for [a few] hours — but every one of them would stop and say, “Oh, my gosh, I’m so excited to now come down this hall and talk about these women!” They were already rearranging their tours in their heads. And one of them said, “I’m going to have to cut something out — I know exactly what I’m going to cut out,” so she can make it to that hallway for the tour.

“Rebel Women” was unveiled by Governor Laura Kelly on Kansas Day, January 29, 2025. Phyllis’ sisters were on hand, but not her 100-year-old father. He had passed the day before.

I had yet to see the finished mural, so I began hunting for images online. One search led me to the website of Kansas Public Radio’s “KPR Presents,” hosted by Kaye McIntyre. When Revolutionary Heart came out, Kaye had dedicated an episode to Clarina’s story and had interviewed Diane. Ahead of the Kansas Day ceremony, Kay interviewed Phyllis and took this photograph that accompanied the podcast of the show:

There was the brooch, and something else that hadn’t been in earlier photos: the knitting needles! This was Diane’s favorite detail from the 1859 free-state constitutional convention. Clarina attended every day and sat in the press section, and she brought her knitting. A New York Times reporter sitting next to her wrote this line that Diane loved to quote: “Mrs. Nichols sits at the reporters’ table every day, some of the time plying her needle, some of the time her pen.” Imagine sitting in a smoke-filled room of shouting Democrats and Republicans and then, during a lull in the action, hearing the click-click of needles. Diane loved that detail — and so did Phyllis.

The moment I saw this picture, I felt overwhelmed. As I listened to the podcast, I just stared at that picture on my screen and sobbed helplessly. Diane held my hand tightly and silently.

***

I know I have put forward a cheerful and somewhat brave face during this season of The Diane Project. It’s not an act. Well, it’s not an act any more than Diane performing as Clarina Nichols — a woman with whom she deeply identified, despite the century and a half between them — was an act. This is who I am now. I’m a manly caregiver.

Women and men, in my experience, have distinct ways of projecting strength and assurance. Diane and I complemented each other. At times I put a little steel in her spine; other times, she tamed this bull in the china shop. I’m perfectly comfortable taking my wife to church every week and parking her wheelchair in the front row. I’ve gotten pretty good at talking about Diane’s dementia and making her care sound as natural as any other family activity.

I’m not a hero any more than any other human who was conscripted into the army of caregivers. Several dads I know have kids who were born with special needs. We can relate to each other. I would like to see more men lean into caregiving roles. They can handle it better than they think. Also, I believe that having more men take on the responsibilities of care instead of looking for the nearest available woman would be a huge cultural shift for the good. We need one of those right now.

Having said all that, I must admit that my description of life as a manly caregiver has not been complete. We must now talk about the hardest part of the job, which is the emotional part, specifically grief.

It’s been three months since I first set eyes on Phyllis Garibay-Coon’s inspiring mural, and it still reduces me to tears. I can’t look at it or even think about it without watering up. This isn’t the “so proud of you!” trickle tear that rolls down the cheek when your loved one is recognized for an achievement, although it did make me mighty proud to see Clarina front and center, leading the avengers.

No, I’m crying because I’m grieving. And I’ve been grieving a long time. Watching Diane go through all the changes the first two years after her diagnosis was hard. In real time I lost not only our partnership but, eventually, her companionship as well.

Elissa Strauss, whom I interviewed in my first issue, interviewed me for CNN.com about caregiver grief. The takeaway of the story is that caregivers often have no choice but to deal with emotions while, at the same time, doing their best to care for a loved one. That described me to a T, but until I read Elissa’s story I hadn’t really looked at it that way.

So then I began thinking more about the role of grief in my caregiving journey. As you’ve followed me on The Diane Project, you’ve seen how I relish the challenge of caregiving. It gives me a sense of accomplishment to do right by my baby. But if I think back over the past three years, there have been many moments when I’ve been alone and heard a sad song on the radio, or found myself awake in the wee small hours, and surrendered to my sorrow.

Then I looked back at my story about soup club and realized, oh hey, there I am coping with my grief in very practical ways. I’m turning off the news to avoid piling on the pain. I’m making new friends and rebuilding my social network to regain some of the emotional support I lost when Diane got sick.

The next story was “This is the kiss test,” where I quoted caregiving coach Pat Snyder telling me that after this journey, “you’re going to be able to love more deeply and have much more compassion, because you had to.” But we didn’t talk about grief, probably because I didn’t want to.

With the Clarina mural, though, the walls of resistance came crashing down. That led to this three-part “Kansas Day” series on my wife’s midlife reinvention. I knew I couldn’t write about my grief without giving you a sense of all that I lost. By now I hope you understand why I said, in the opening lines of The Diane Project, that she is the woman to whom I owe everything. And why I am glad to be her full-time caregiver for as long as it takes to give her a safe and gentle landing in the next dimension.

My friend Ric Hudgens wrote a good reflection recently on grief and grievance. He notes that men who act out in anger are usually avoiding their own pain. By confronting pain we experience grief, which is the necessary antidote to the poison of grievance. “We are all capable of addiction to grievance,” Ric writes. “We must remind ourselves regularly that loss is constant and universal.”

He’s right. I could just as easily have avoided the pain and spent those years in a state of anger over the unfairness and cruelty of cognitive illness. I know some male caregivers who have anger issues and all can say is: There but for fortune go I.

It certainly worked to my benefit that this wasn’t my first rodeo. My caregiving journey with Diane spans the course of a long and fruitful marriage. Indeed, that through-line of mutual care is one reason why our marriage has been long and fruitful.

For how much longer, though?

On Palm Sunday I told our faith community that we are transitioning Diane to hospice care. I told them that not much was changing, that everything will stay home-based, but now I’m getting some extra (and much-needed) help.

The truth, however, is that things are changing. I still go in for the kiss test, but her kiss is getting weaker. I look in those tired eyes and hold that hand with its still-strong grip. She’s hanging on, but I can feel that still-strong grip loosening. I think this will end beautifully for her — but I’m going to be a wreck.

So I’ve decided to take a break from The Diane Project. We’ll call this the Season 1 finale. I plan to return with Season 2 in the fall. In the next four weeks I’m going to run a marathon. I’m going to celebrate my 60th birthday — and our 30th wedding anniversary — and I’m going to Kansas for a grandson’s high school graduation. And I will visit the Statehouse in Topeka to see “Rebel Women” in person. I will bring tissues.

If there are any major developments on the home front, of course I will pass them along.

Endnotes

Here’s Part 1 and here’s Part 2 of “This Is Kansas Day.”

My reflections on grief were aided by “The Curse of Grievance” by Ric Hudgens on his Substack, The Brink. Ric is a retired pastor who lives in our neighborhood. He was also the best man at our wedding and a dear friend going back to small-group days in our faith community. I’m publishing this today because it is Ric’s 70th birthday.

Elissa Strauss’ excellent book When You Care is now in paperback. I have a number of recommended titles on my Bookshop page.

While researching this story I learned that Charles Everett Pace had passed. He was my (and Diane’s) favorite chautauqua performer. I also saw him in 2009 conversing with Crosby Kemper as though he were Langston Hughes in the flesh. The video I posted of Charles performing as Frederick Douglass is one of my most-watched YouTubes.

Tours of the Kansas Statehouse are held pretty much every hour, year-round. Totally worth your time.

During the break I will send out a special thank-you gift to those of you who subscribe to our Substack. Look for that in your email. If you aren’t a subscriber yet, please hit the button below.

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Take care,

Aaron

***

Diane and I were excited about our first research road trip, a 2,000-mile excursion to Mendocino County, California. It’s where Clarina Nichols is buried and where she spent the last 13 years of her life, after deciding she was better off there than in Kansas.

Clarina had spent 1864 and 1865 in Washington, D.C. She and her daughter Birsha served as clerks in the Treasury and Army Quartermaster departments, replacing men who’d gone off to fight. Clarina also went through the revolving door of matrons at the troubled Colored Home run by the National Association for the Relief of Destitute Colored Women and Children.

Mother and daughter returned to Kansas and found their beloved Quindaro all but abandoned. Many of the town’s buildings had been torn down for firewood by Union troops who camped there during the war. Then in 1867, Clarina’s male allies abandoned her. That year the legislature put two measures on the ballot that would have altered history by giving the vote to women and Blacks in the state. Susan B. Anthony led a parade of national suffrage leaders to Kansas to help Clarina campaign for the measures. But leading Republicans backpedaled on their early support and both measures were soundly defeated at the polls.

In her final four years in Kansas, Clarina turned away from politics. She divided her time between farming, caregiving and keeping up with the women’s movement from afar. Her youngest son George married a Wyandotte Indian named Mary Warpole. After Mary fell ill, the task of raising their three children fell to Clarina.

Then her daughter Birsha accepted a marriage offer from a Civil War general and moved back East. Besides breaking her mother’s heart, Birsha left Clarina in charge of a sickly teenage girl named Lucy that she’d brought home from Washington. We only know this from a single letter that Clarina wrote to her daughter-in-law in 1871, but this letter gave Diane more pause than anything else in her research.

From what Diane gathered, Lucy was living at the Colored Home when Birsha took pity on her and, according to this letter, “wept and begged” her mother to let her take the girl with them. Clarina was opposed, but relented after Birsha pleaded with her, saying she wanted someone “to love and care for.” But once Birsha was married and had a white stepdaughter to care for, she simply left Lucy behind in Kansas.

Clarina was none too happy about being stuck with this sullen teenager. She wrote that the child had seemed so “white and pretty” at first, but that she now saw Lucy for what she truly was — “a natural born thief and a liar.” She added, “I shall get rid of her as soon as I can.”

Clarina was hardly a saint among women, but this letter seemed way over the top for her. It troubled Diane a long time. She wondered how Clarina could lash out like that, especially since it was her daughter, not Lucy, that she should’ve been mad at.

Re-reading the letter through caregiver’s eyes, I have a new perspective on it. Clarina wrote that letter in 1871, her last year in Kansas. Lucy had been living with her for three years. Lucy had likely contracted a chronic illness at the Colored Home, which was notorious for its filth. One matron found the children “eighty in number, and not ten healthy ones in all, and not one free from the most disgusting parasites.”

In her letter Clarina reports having to nurse Lucy through a long illness after Birsha’s departure. Even when healthy, Lucy would’ve been a handful for an older woman who herself was not in the best of health, and was also caring for George’s sick wife and three grandchildren.

Correspondence was Clarina’s lifeblood, the way social media is for some people today. She wrote constantly — sometimes for publication in newspapers, sometimes to stay connected with allies in suffrage, and sometimes to unburden herself. Always mild-mannered in person, Clarina could complain bitterly to a far-off friend or relative about low pay for a speech or a sexist insult or the physical ailments bothering her at that time.

To me, the simplest explanation for the Lucy letter is that she wrote it when she was at the end of her rope. Anyone who has ever been an overwhelmed caregiver (or has had to delete a tweet) should be able to relate.

***

Clarina wrote that letter to her daughter-in-law Helen, who lived in Northern California with Clarina’s son Aurelius and their family. He had a successful photography studio and a newspaper.

I’ve always loved the story of how Aurelius met his wife Helen, and now that I’m a caregiver I love it even more. On her first homestead Clarina counted among her neighbors old John Brown, the God-fearing abolitionist. This was the time of “Bleeding Kansas,” a period of intense lawlessness among pro-slavery and free-state settlers that served as a backdrop to the political struggle that was tearing the nation in two.

In 1854 Kansas Territory was opened to white settlement. Pro-slavery Missourians flooded into Kansas and stuffed ballot boxes in the first election, resulting in a pro-slavery legislature. Franklin Pierce, a Northern president who relied on Southern support, turned a blind eye to the shenanigans.

Then came May of 1856 and two events that triggered John Brown. First, the free-state capital of Lawrence was sacked by pro-slavery forces. The next day, abolitionist senator Charles Sumner was savagely beaten on the floor of the U.S. Senate after delivering a fiery speech on Kansas. These events caused old man Brown and his sons to lose their minds. They went at night to a settlement of families on Pottawatomie Creek who were said to be allied with the pro-slavery cause. They called the menfolk outside, then they attacked them with broadswords, killing five.

After the massacre, a posse led by a deputy U.S. Marshal went looking for old Brown. His family quickly pulled together a militia of sympathetic neighbors. Clarina was out East settling her late husband’s estate and stumping for Republicans. So she wasn’t there to stop her two oldest boys, Howard and Aurelius, from joining John Brown’s band.

The free-state men surprised the federal posse at Black Jack, near Lawrence. The resulting skirmish is now considered the first-ever military battle over slavery on U.S. soil. On that day the old man and his militia prevailed, and John Brown was never charged in the Pottawatomie massacre. But in the fighting, Aurelius took a bullet and limped to a nearby cabin for help.

The McGowan family took in Aurelius and cared for him during his long recovery. Specifically, 18-year-old Helen McGowan cared for him. The two got married in 1857. By then Aurelius, Helen and her parents had decided they’d had enough of Bleeding Kansas and joined a wagon train to California.

Clarina wrote that letter about Lucy in exasperation and sent it to her daughter-in-law Helen in California. As I’ve argued, Clarina was overwhelmed with the demands of care, needed help and was ready to move someplace where should could get help. And by the time she wrote that letter in 1871, a transcontinental railroad existed that could carry her to California in less than two weeks.

Clarina, George, Mary and their children, but not Lucy, boarded a third-class rail car and headed west, arriving in Ukiah, California, on New Year’s Day 1872. In time Mary would pass away and Clarina, though crippled by rheumatism and bothered by chronic bronchitis, raised her grandchildren, home-schooling them from her bed. “I am a cheerful invalid,” she would say. Clarina also contributed a chapter to the monumental History of Woman Suffrage and kept up correspondence with her eastern allies until the last days of her life in 1885.

Aurelius and Helen’s daughter Grace would become a renowned regional painter and Ukiah’s leading cultural figure. The Grace Hudson Museum, begun in her 1911 Craftsman bungalow and later expanded into a large, modern gallery, contains the family archives. Museum staff were at work on the first-ever permanent exhibit on Clarina I.H. Nichols when we reached out to them in 1999.

A few weeks before our planned road trip, Diane felt a lump on her breast. She’d had cysts before but this one worried her. Diane’s doctors weren’t sure what it was — a harmless cyst or maybe a small carcinoma. Once again Diane sought a second opinion, and this time all paths led to Amie Jew. A surgeon beloved by a legion of breast cancer survivors, Dr. Jew agreed to look at Diane’s tissue sample.

We packed our bags and awaited the test results. A call came from the hospital: The tissue tested negative! We high-fived, jumped in the car and drove to California. One afternoon I left Diane at the museum and went to a phone booth to retrieve our answering machine messages. There was a message from Diane’s doctor. He sounded … nervous. “Yes, if Ms. Barnhart could call us back right away,” he said, leaving no details. The next message was from Amie Jew. She wanted Diane to call her back.

Oh dear. The hospital hadn’t bothered to check with Dr. Jew before calling us with the “it’s negative!” report. And it seems Dr. Jew had a different opinion about the tissue sample. So Diane’s doctor had gone into CYA mode. (When we got home there was a certified letter from the hospital with the same vague message that was on our machine.)

On the drive back to the museum, I decided I wouldn’t tell Diane about any of this until we had left California. I had been in the room for all of her doctor visits. I knew that the lump, tumor, cyst, whatever, wasn’t aggressive. I also knew that Diane had a 99-plus-percent chance of survival if she had it removed. Telling her now would make no medical difference and she would want to cut her research trip short. At the very least she would worry about it until we got home.

Sooner or later, every cognitive caregiver learns to play fast and loose with the truth. There’s even a high-sounding phrase for it: compassionate deception. People with dementia can’t regulate their feelings. If I say the wrong words, Diane might have a meltdown. So I’m selective in what I disclose. Of course you should be as honest as you can with your loved ones, but there were many occasions over 30 years when I needlessly stepped on Diane’s feelings.

I told her the news on the drive home. Diane thanked me for not telling her sooner. Dr. Jew removed the lump. Then, while recuperating in the hospital, Diane informed me that she had edited her last textbook. This wasn’t a request. She had said yes to me without hesitation when I asked to quit my job, and she knew I would do the same for her. From then on it was all Clarina all the time.

The following summer we entered the Race for the Cure. Like most of the hundred or so women on Team Amie, Diane opted for the 1-mile “fun walk” through downtown KC. I joined her. At one point Diane challenged me to a footrace. We set a target a block or two down Pershing Road and sprinted toward it. I lost — badly.

We had a good laugh at how out of shape I must be to get boat-raced by my wife. It was only months later that we looked back and saw what we couldn’t see that day: A man in his 30s of ordinary fitness should have no problem keeping up with a woman in her 50s of ordinary fitness in a short sprint.

That fall we loaded up the car and headed to Vermont. The trip to California was a classic, pre-digital-age archive dive. We spent most of it in one room inside a modern museum. Vermont was more like living history. The house where Clarina Nichols was raised over 200 years ago was still standing on the village square of West Townshend. The family that was living there invited us in for a tour; they knew who Clarina was.

The church that the Howard family attended and where 17-year-old Clarina Howard took her year of extended schooling was still there. Here’s a video of scenes I took around West Townshend, including the Howard house (the white one), other buildings on the village square, and the historical markers for Clarina and her cousin Alphonso Taft (whose son William Howard Taft would become a U.S. President).

Over in Brattleboro we found the building where Clarina’s second husband, George Washington Nichols, published the Windham County Democrat. By the end of its run in 1852 it was being edited by his wife — George was too ill to continue the work — and the paper had separated from the Democrats over slavery and woman suffrage. We met members of the Townshend Historical Society, who were Clarina’s biggest boosters and treated us like VIPs. And we stayed with Lyn Blackwell, who was working on an academic biography of Nichols and had shared valuable research finds with Diane.

Afterward we drove to Massachusetts to see friends. I can still remember the completely exhausted feeling I had after hoisting my luggage up to the top floor of their townhouse. My head spun. I could feel my heart pounding in my chest. Something was up for sure. And yet, just before our trip we had visited the clinic at the hospital — the same hospital that had whiffed on Diane’s lump the year before — where a third-year resident looked me over and declared me a perfectly healthy male who just had a lot of earwax. He never did a blood test.

On a Friday night that November we attended a Kansas City Star gala at Union Station. The next morning around 5 a.m., I awoke with a 104-degree fever. I tried getting out of bed but could hardly stand up. Our neighbor drove us to the ER, where a doctor immediately triaged me to a bed. My spleen was the size of a football. “You look like you’re pregnant,” Diane had commented earlier. Someone tested my blood and found that I was out of platelets, out of hemoglobin, out of neutrophils (the white blood cells that fight off infections). The ER doc told Diane that it looked like leukemia.

Fortunately, testing later that day revealed that it was a chronic form called hairy cell leukemia. A front-line chemotherapy had been developed a few years earlier. According to the oncologist who treated me there, it was 90 to 95 percent effective in wiping out hairy cell leukemia. Great news — except that I didn’t fit the profile. The typical hairy-cell patient is a man in his late 50s or early 60s. I was 35. It seems my relative youth made my disease more resistant to front-line treatment. The chemo did nothing for me except make my whole body break out in a burning rash.

Diane found a Chinese medical practitioner in the area who treated me with acupuncture and herbs. I searched the scant online medical literature as I waited for my oncologist — a grim fellow with an on-brand mustache — to get back to me. Finally he said he would perform a second round of the failed chemo. Also, he wanted me to know that he disapproved of Chinese medicine.

That did it. Diane reached out to her brother-in-law, a gerontologist in New York, who offered to find the leading hairy-cell clinicians around the country and ask their opinion. None of the doctors he spoke with thought a 35-year-old patient should be getting a second round of the failed chemo. Armed with this information, we confronted my doctor, knowing it was likely our exit interview. He wouldn’t budge.

I met with a respected hematologist who had a large private practice in town. He said there was a trial underway at M.D. Anderson Cancer Center that would be perfect for me, and he offered to reach out to a colleague there. Okay, but how was I getting to Houston? Commercial flight is a dicey proposition for someone with zero immunity. Then Diane said she knew a coupla Minnesota farmers with a Cessna. Her brother Donald and his son Steven said they’d be honored to transport us to and from Houston.

After the first round of treatment, I did the rest of my infusions in KC. The clinical trial was a success. But it would be several months before it was safe to go out in the world, so I quarantined on the third floor of our house and Diane took care of me.

It’s hard not to look back at this give-and-take of dependency — taking turns as the household breadwinner and the caregiver for the other — and see that it was the most powerful determinative force in our marriage, like children are for other couples. Would Diane have made her midlife pivot if I wasn’t there for her? Would I have gotten my dream job, or had the nerve to leave it 15 years later, if not for her love and support?

***

While I convalesced upstairs, my legally blind caregiver managed to crack out a draft of her Clarina Nichols biography. She titled one of the chapters “Woman on a Mission,” which could just as well have described herself.

For years Diane had been writing and editing for young readers. She was familiar with the dreary monotony of women’s history titles available to that audience. A biography of this western feminist would be a welcome addition to the Young Adult market. But that first draft showed her the limits of the YA format. Much of her research simply couldn’t be used in a short book with a fast-moving narrative. And forget about endnotes — who did those in YA?

Diane realized she had higher aims for the first-ever biography of Clarina Nichols. She wanted to produce a complete work of scholarship, aimed at a general audience. And already there was an audience forming.

After Diane’s article appeared in the Kansas City Star, she had received an invite from the Kansas Women Attorneys Association to be the featured speaker at their state convention. That introduced a new challenge. Although Diane had retrained her brain to rely on peripheral vision, she still wore thick glasses and hovered close to the computer screen. That was fine in the home office, but my wife was not about to read a prepared speech to a roomful of attorneys holding the pages up to her face.

The only option was to memorize her speech. Which she did — a one-hour talk on Clarina Nichols, committed to memory and flawlessly recited. Once she cleared that hurdle, the world was her oyster. The human brain is amazing.

And now we come to my favorite twist in the story: Diane, age 60, takes up acting.

It began with a museum visit. We drove into the small town of Lecompton, where they were holding Lecompton Days, with carnival rides, local bands and a Bleeding Kansas reenactment. As we arrived we were greeted by a serious-looking reenactor who was not dressed in uniform but in the gentlemanly attire of the era, which in Kansas often included a weapon protruding from one’s boot. “Excuse me,” Diane asked the man, “is that a Bowie knife?”

This was our introduction to Tim Rues, director of the historic site at Constitution Hall, built in 1855 when Lecompton was the pro-slavery capital of Kansas Territory. As we learned in Part 1, Kansas history buffs know a prospect when they see one. Within minutes Diane had an invitation from Tim to speak at the site’s annual Bleeding Kansas lecture series.

It was the first of many invites over the years. Upstairs at Constitution Hall is a unique venue, steeped in politically incorrect history — besides the slavery business, the Klan used to meet there in its Rotarian heyday.

The Bleeding Kansas series kicks off on the last Sunday of January with a Kansas Day program. For those of you unfamiliar with Kansas Day or the importance of January 29th in the Sunflower State, that was the date in 1861 when Kansas was admitted to the Union following much turmoil and delay.

Kansas Day is not an official holiday but it might as well be one. Every year buses of children descend on Topeka to tour the magnificent statehouse and gawk at the 20-foot-high mural of John Brown. In classrooms across the state, students read stories of Bleeding Kansas and learn that the state motto, Ad Astra Per Aspera, means “To the stars through difficulties,” a lofty Latin phrase coined by free staters to celebrate their triumph.

In the end, neither guns nor election fraud nor the Dred Scott decision nor two pro-slavery presidents could defeat demographics. More people from the North moved into Kansas than from the South, and Northerners were generally anti-slavery, though few shared Brown’s magnanimity toward black people.

Even so, Congress refused to act on the 1859 free-state constitution, which meant that Clarina and other Kansas women had to wait for their rights. It took the election of Abraham Lincoln, the secession of seven states and the expulsion of their representatives in Congress for Kansas to become the 34th state.

***

Diane’s interest in Clarina Nichols soon became known to Tim Rues’s friend Howard Duncan. Howard extended an invite to join his troupe of historic thespians known as the Lecompton Reenactors. Since I was along for the ride, he invited me too.

Bleeding Kansas was indeed bloody, but mostly it was a war of words fired from the mouths of politicians and the pages of the partisan press. Howard Duncan created the Lecompton Reenactors to bring the free-state/slave-state struggle to life with monologues delivered by real-life characters on both sides. They entertained audiences by haranguing and dunking on each other while telling the story of Bleeding Kansas.

Howard wrote the monologues. He gave me a script he’d written for a pro-slavery minister named Thomas Johnson. He wrote a Clarina Nichols script especially for Diane, who was not especially thrilled with it. After negotiations and a rewrite, though, she agreed to join the Lecompton Reenactors. As you can see from these clips, the Reenactors took their show just about anywhere. I have no idea why they were clanging those bells.

I had a lot of fun playing a slaveholding man of the cloth. As for Diane, she had stage presence from the get-go. She never cottoned to that script — she wondered, Why not just use the actual words of Clarina Nichols? But she had dipped her toes in the acting waters and she enjoyed it. Soon she would get the chance to write her own script and take center stage with it.

The Kansas Humanities Council announced that it would stage a “Bleeding Kansas Chautauqua” in the summer of 2004. Inspired by the traveling chautauquas that toured the Midwest in the late 19th and early 20th centuries, the KHC would bring a historical road show to towns across Kansas. They were looking for people with both academic rigor and dramatic flair to give talks by day and performances by night. The KHC was casting six roles: Abraham Lincoln, Frederick Douglass, John Brown, senators Stephen Douglas and David Rice Atchison … and to offset all that testosterone, Clarina Nichols.

Diane had never acted before Lecompton and had only recently begun taking graduate classes in history. But I knew this was her moment. I told her there was no one who knew Clarina Nichols better and could bring her to life on the stage. I can’t recall if Diane had any reservations, but if she did she got over them fast. It took her one week to write a 30-minute monologue in which Clarina tells her story in her own words, and a little longer to memorize it.

Then she needed an audition tape. As it happened, professor Steve Collins had asked Diane to appear on the community college’s TV station to discuss her work. I reached out to the TV show’s producer, who agreed to stay after the interview and film Diane’s audition. When we got to the studio we found that the equipment was so old that everything was still being filmed in black and white. How perfect was that? Diane did the scheduled interview, then changed into her costume, transformed into Clarina, gave her performance, took home two copies of the videotape, mailed one to the KHC … and waited.

In Part 3 …

Two decades later, an unexpected epilogue to the Clarina Nichols story moves one of us to tears. Lots and lots of tears.

Endnotes

Whenever I hear the words compassionate deception, I have the irresistible urge to rewatch Jim Gaffigan’s routine on lying.

We were early supporters of the effort to restore the Black Jack Battlefield, where Clarina’s son Aurelius was wounded. When we wrote our travel guide we rated Black Jack as one of the must-see history destinations in Kansas.

There’s a happy ending to the story of the hospital that repeatedly failed us. In 1998 the University of Kansas Hospital (also known as KU Med) broke free from state oversight, formed its own independent board and began to improve in every facet. It eventually bought the oncology practice where I’d wound up and became the region’s top cancer center. I changed to KU Med for primary care in 2016 and was so impressed that I brought Diane over in 2019. It was through our primary care doctor that we were referred to KU Med’s dementia practice, where Diane received an accurate diagnosis and exceptional care.

I recently learned from Stephen B. Oates’s Abraham Lincoln: The Man Behind the Myths that Carl Sandburg had also been aiming at a young audience when he started his Lincoln biography project. “What began as a teenagers’ book swelled into a massive ‘life and times’ that took fifteen years to complete and ran to 3,765 pages in six published volumes,” Oates writes. Here’s the thing: Teenagers like to read grown-up books. Diane met with lots of middle and high school girls over the years, many of whom did National History Day projects on Clarina Nichols using her biography.

Listen to The Diane Project

Beginning with this newsletter, every new story will be released on Substack at the same time as its audio version (read by me). It will be posted at the top of the story. You can also listen to the audio through your favorite podcast app. The podcast version will include a transcript but it won’t have the Endnotes or any of the pictures and videos that you see in this newsletter.

Thank you’s

Thanks for shopping TDP’s Bookshop links, which benefit the Robert H. Levine Foundation for Lewy Body Dementia Research. Bookshop now features ebooks.

Thanks for checking out the history titles that Diane and I wrote and published.

Thank you for sharing this newsletter with others.

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Thanks for leaving your thoughts and questions in the Comment area.

Above all, thank you for reading.

Take care,

Aaron

Here’s the entire “Kansas Day” story as a single podcast:

This story was originally posted to Substack, where you can get bonus content and discuss with Aaron and other readers. You can also subscribe to the podcast.

Here are the Substack versions of this series:

This is Kansas Day (Part 1)

This is Kansas Day (Part 2)

This is Kansas day (Part 3)

Here’s the entire “Kansas Day” story as a single podcast:

This story was originally posted to Substack on February 22, 2025. Join our Substack to get bonus content and discuss with Aaron and other readers.

Here are the Substack versions of this series:

This is Kansas Day (Part 1)

This is Kansas Day (Part 2)

This is Kansas day (Part 3)

Lately I have started to rethink my vow. After wandering in the intellectual desert for most of a year, with scores of drafts, many thousands of words and exactly four published stories on this Substack to show for it, I missed the old days of productivity. I had to admit to myself that deadlines — much as I hated them — made me productive. And word limits helped me make my deadlines by forcing me to cut, cut, cut, removing excess verbiage until the story could squeeze into its container. Even Substack has a word limit:

The breaking point was “This Is Kansas Day,” the essay that many of you began reading when I published Part 1 last month. “Kansas Day” is unlike any story I’ve written. It’s sweeping, covering more than 30 years of our personal and professional lives. It’s challenging: I’m taking hard looks at myself and my marriage to make sense of the story I’m telling here.

And it’s got a purpose. My time with Diane is drawing to a close, and I don’t want that to end without taking full stock of what we did together. I’m at that age where time moves with relentless, unforgiving speed and I know that if I don’t write “Kansas Day” now, I never will.

That’s a pretty long preamble and it’s making me cry, so let’s cut to the chase.

A podcast alternative to reading long stories

When the first draft of “Kansas Day” blew past 5,000 words and I didn’t even notice, I realized I had to chop this thing up. I pulled out a legal pad, got down my major ideas and organized them into a three-parter.

Part 1 weighed in at a little more than 2,000 words. Then I wrote Part 2 … and it went to twice that length. I thought about breaking Part 2 into two parts, like they do with the seasons of streaming shows. But I felt that would require finding an artificial break point to the story. I’m not exactly Charles Dickens or Harriet Beecher Stowe, enticing you to pick up next week’s edition to see how the cliffhanger resolves.

That night, the matter still unresolved, I went to bed listening to an audiobook. Sometime in the night I awoke, literally listening to the solution:

Along with the prose version of each story, I will now read my stories to you in my own, non-artificial, non-intelligent voice. Basically it’s the audiobook version of the newsletter.

This will be a welcome alternative for those of you who find reading screen after screen of text to be a slog. For those who listen to podcasts, here’s a new one to add!

The first three stories are linked below. I’ve also added audio widgets to their respective stories on Substack. There’s an audio-only page of my site as well.

For pod people, here are the feeds:

• Apple Podcasts

• Spotify

• RSS feed

I’m getting YouTube Music Podcasts added as well. If there’s another podcast app that I can add, let me know. The feeds are also listed on each episode’s page (along with a totally unnecessary AI-generated transcript).

Going forward, each story of The Diane Project will be accompanied by its audio version when it posts, and the podcast will be released at the same time.

I am currently waiting to get over a cold before reading Parts 1 and 2 of “This Is Kansas Day.” So look for that — not to hold myself to a deadline or anything — sometime next week.

Take care,

Aaron

P.S. If you aren’t getting TDP by email, please subscribe. I’ll send you my free guide, “What Every New Cognitive Caregiver Needs To Know.”

Episode 1

Episode 2

Episode 3

This story was originally posted to Substack on January 16, 2025. Join our Substack to get bonus content and discuss with Aaron and other readers.

(AUDIO NOTE: I was still trying to find an optimal environment for recording when I did this podcast. I did it in two takes, with the second take noticeably worse in audio quality. You’ll hear what I mean around the 9-minute mark and toward the end. Each clip of lower-quality audio lasts about a minute. Sorry about that!)

This story was originally posted to Substack on December 25, 2024. It’s been adapted for audio.

I’m reading an essay I originally posted October 31, 2024, to my Substack, titled “This is the Diane Project.” It’s been adapted for audio.

To see all the episodes of The Diane Project podcast, visit this page.

First of a three-part essay on my wife’s midlife reinvention. Rather listen than read? Click the audio widget to hear me reading the “Kansas Day” series, all three parts.

When we were dating in the early ’90s, Diane lost the central vision in her left eye. This can happen with high myopia. At the time she was a senior editor at an educational publishing firm in Evanston. Vision loss could be both personally and professionally devastating to her. So when an eye surgeon proposed scarring the macular tear with lasers, of course she said yes.

Those procedures proved to be not only excruciatingly painful but quite useless. The only positive takeaway from the ordeal was that it seems to have convinced Diane that I was the real deal. She was a 50-year-old divorced mother of two, and I was her 28-year-old boyfriend. It couldn’t possibly last. “You won’t want to be married to an old woman,” she predicted (wrongly, it turns out). But hadn’t I driven her to every eye appointment? Hadn’t I sat in the room as she endured these laser procedures? And waited on her hand and foot afterwards?

In traditional wedding vows, two people say they will have and hold each other “in sickness and in health.” It’s a caregiving pledge. I had made good on my end, and in due time she would return the care.

Of course, being a modern couple we couldn’t just do the trad vows. We also wrote a vision statement. I think we must have copied some of these lines out of a Harville Hendrix book:

• “We build each other up, support and affirm each other, and are always there for each other.”

• “We live without needing to be in control.”

• “We stretch each other's minds and areas of understanding.”

• “We laugh a lot.”

• “We give each other grace and the benefit of the doubt.”

• “We help each other achieve our dreams.”

It went on like that for most of a page. To our credit, we took these promises seriously. Every so often we would pull out that statement and review how we were doing.

Sometimes we might even flip the page over and see these goals we tacked on at the end:

• “We have both found a voice, an audience, and a deeply satisfying purpose for our writing.”

• “We collaborate on writing projects.”

I’m sure they were put at the end because, at the time, they were purely aspirational. Diane was revising a book for an educational publisher in Wisconsin and I had a secretarial job with a late-night TV newsletter. Sure, it would be great to compose “deeply satisfying” works together. But what? How? I don’t think we had a clue.

Diane eventually returned to work with her one wobbly eye. She also took out a sort of insurance plan, attending classes at night and on weekends to earn a certificate in massage therapy.

After we married, I moved in with her — and almost immediately I asked to quit my desk job and try my hand at freelance writing. I had a newsletter that earned no money. I wrote once a month for the Village Voice and had a couple of contacts in journalism. It was a nervy ask on my part. Still … “We help each other achieve our dreams,” right? She said yes.

Fifteen months later the Kansas City Star came calling. They wanted to hire me as their television critic — paid move, 401(k), health insurance, the whole shebang. Now, I’ll be the first to admit that writing about television was never “deeply satisfying” work for me. But I was good at it. And we both felt a propulsive excitement about my burgeoning career as my byline appeared in ever-more-prestigious publications.

They flew us both to KC, and while I interviewed at the paper she drove our rental car around town. She looked at the nice neighborhoods my editor had told us about and the east side slums that he hadn’t. She gave me permission to upend our world. It was November 1996, and it was the last time I remember her driving a car.

As we were preparing to move, Diane lost the central vision in her other eye. She had been assured years before that macular tears “very rarely” happened in both eyes. Now she couldn’t see five feet in front of her. A doctor in Chicago proposed a Hail Mary — radical surgery on both eyes to remove the blood vessels that were occluding her central vision. This would require complete immobilization for two weeks, so great was the risk of retinal detachment.

Diane tentatively agreed to the surgery. She lined up friends to help with meals and such, since I had to get to Kansas City to start work. But she also found a doctor in St. Louis who was much more of a specialist in conditions like hers and sent him her chart for a second opinion.

One day the phone rang at my desk. I picked up and heard someone in a low voice talking rapidly. Realizing it was the doctor in St. Louis, I grabbed a pen and began taking notes. In my experience, he said, some patients see a short-term benefit from these surgeries, but long-term their outcomes are no better than patients who do nothing, I’m sorry to say.

I called Diane with the news. She sounded relieved. But here she was, legally blind, moving to a strange town, couldn’t drive, couldn’t look at a screen. She had agreed to leave Evanston after 20 years, leave friends and family behind, all so I could live the ink-stained life. She was genuinely thrilled for me, but there had to be moments when Diane saw the unfairness of it all.

And yet, my wife is nothing if not resilient and resourceful. Besides, you don’t tell a woman with Nutritional Healing and Your Body Believes Every Word You Say on her bookshelf that nothing can be done.

One day, I think while in a health food store, Diane found a book on eccentric viewing. This technique, also known as “peeking around the blind spot,” is based on the idea that if central vision shuts down, the brain can be trained to “see” more with the periphery of the eye. Up till then we had both assumed that her vision problem was an eye thing. This book was asserting that it was a brain thing.

If you’ve read Norman Doidge’s The Brain That Changes Itself, you know that the unlimited plasticity of the adult brain is one of the great scientific findings of the past 50 years. But it wasn’t until about 20 years ago that clinicians started doing studies to see if rigorous training could help patients remap their eyesight after vision loss. What I’m describing happened a decade before that.

This new age book on eccentric viewing had a bunch of eye exercises that Diane was supposed to do. She did them every day for hours, until she had to lie down and put a cold compress on her eyes. But in a few weeks she was able to use her computer again. She put a large text magnifier on her desk, supersized the fonts on her screen and kept bright reading lights around the house.

Her eyesight never was fully restored. The way she always described it was to turn to someone and say, “I can see you but I can’t make out your face.” Still, she was able to pass for a sighted person and resume her regular routine. The human brain is amazing.

Back when we were getting friendly, not yet dating, we bonded over history. I would go over to her house for dinner, then we’d watch Ken Burns on TV. So when we moved to Kansas City it seemed natural to learn about the area by visiting all its museums.

One fine day we drove out to the Wyandotte County Museum, hidden away in a park at the edge of the metro. We walked through the permanent exhibit (mostly archaeology, yawn), then wandered into the lonely corner that every county museum has, with the community room and the huge stash of donated things.

Here we found a table with some handmade displays. One of them featured a laser-printed picture of a woman that appeared to be from the nineteenth century and a paragraph explaining who she was. This was Diane’s introduction to the woman who changed her life.

Her name was Clarina Irene Howard Nichols, and we learned that she lived in Wyandotte County in the 1850s and ’60s. She had been a newspaper editor in Vermont who counted as her friends Susan B. Anthony and Elizabeth Cady Stanton. She was an early figure in the woman suffrage movement that started at Seneca Falls in 1848, becoming a popular speaker on the circuit. Then, in her forties, she left it all behind and moved her family to Kansas Territory.

Clarina Nichols was a woman on a mission. Charming herself into the male-dominated politics of her time, she helped secure for the women of Kansas the most liberal set of reforms anywhere in the Union. She was heralded by her peers, memorialized in the early volumes of women’s history and then, like everybody else not named Anthony or Stanton, completely forgotten. Judging from this display, Clarina Nichols was even a footnote in Kansas history.

Diane — also a woman on a mission and experiencing upheaval in midlife — wanted to know more about this kindred spirit. She tracked down the museum’s director, John Nichols, who was working that day, and began quizzing him. A soft-spoken Kansan, John Nichols (no relation) said he had created the display on Clarina because she had been, in his opinion, unjustly overlooked.

Sensing that Diane had more than a passing interest in this pioneering feminist, John showed us to the archives room and introduced her to Steve Collins. A professor at the nearby community college, Steve was there working on his index of the Quindaro Chindowan, a newspaper Clarina Nichols wrote for in 1856.

Steve told us that there had been a scholar who had gathered Clarina’s local writings and published them in the Kansas Historical Quarterly in the 1970s. He was said to be working on a book about her but had since passed away. By the end of their hour together, these two men were urging Diane to write the biography of Clarina I.H. Nichols.

We started with weekend trips to the state archives in Topeka, working through their slim collection of texts and microforms related to Clarina. Research trips would become our favorite form of travel. Besides serving as her driver, I read any texts that she couldn’t and doubled her productivity at archives, which in those pre-digitization days had to be visited in person.

Diane acquired and read through volumes of the Kansas Historical Quarterly, including the eight-part series of Clarina’s writings compiled by the late Joseph Gambone (the would-be biographer). Next we set off in our Honda Civic for research trips to Vermont and northern California, where Clarina spent the last 14 years of her life.

When I told my editor at the newspaper what I was doing with my two weeks of vacation, she asked if Diane would write a profile of Clarina for the Sunday arts section. This would be the first summation of her work and would appear in a newspaper that was read by a million people.

This led to a discussion between Diane and me about how she would sign her article. When we married, our pastors had introduced us as Mr. and Mrs. Barnhart. She began using my last name professionally. But I didn’t like the idea of her appearing in the Kansas City Star as Diane Barnhart. I didn’t want readers to think I was the reason she was getting published — that was Clarina’s doing.

One option would’ve been to use her first husband’s surname professionally. That was what Diane’s sister had done after her divorce. But my wife had no interest in that option.

So that left the name she was born with: Diane Eickhoff. Oh, the places that name would go.

In Part 2 …

Caregiving takes center stage as Diane’s life pivot continues. Look for that next week.

Endnotes

At some point I got it in my head to shoot footage for a documentary (never made) on Diane’s journey with Clarina Nichols. Here’s a short clip of her touring the ruins of Old Quindaro with John Nichols and Steve Collins. Steve is showing her the site where the Chindowan was published. I also made my sweaty bride stand next to the John Brown statue for a while. This Italian-made monument to the storied abolitionist was dedicated in 1911 following a fundraising campaign at Western University, an HBCU that was on the Quindaro site from 1865 to 1944.

Speaking of Harville Hendrix, his Getting the Love You Want is still a great resource for couples at every stage of the journey.

And speaking of our wedding, here is the Robert Bly poem that we put on the cover of our program. The poem presages all the road trips we would take and all the Kansas City monarchs we’d behold.

Diane update

Shortly after I sent out this postcard to friends and family, Diane got pneumonia. Turns out we both had the flu, but I treated it like a cold for a few days. When neither of us improved I took her to urgent care, where I was told I’d better take her to the ER. After that she turned around quickly. I’m happy to report that she’s back to her usual self, if not her old self.

I mentioned that we visited museums when getting to know KC. We did it using the Passport to Adventure, a little booklet issued every year to promote the area’s historic and nature sites. Without the Passport I doubt that we ever would have made it out to the Wyandotte County Museum. As of 2024 it was still being published on actual paper.

Land of Winston

I wrote most of this newsletter while reacquainting myself with the music of the late George Winston. His solo piano LPs were part of the soundtrack of my life growing up in eastern Montana. This past Advent I took part in a dance at church that had been choreographed to Winston’s “Carol of the Bells.” Apple’s algorithm (I hesitate to call it “Apple Intelligence”) noted my interest in the song, and a few weeks ago it surprised me with his marvelous 2024 album Eastern Montana, the first of several planned posthumous releases.

Thank you’s

Thanks for shopping TDP’s Bookshop links, which benefit the Robert H. Levine Foundation for Lewy Body Dementia Research. Bookshop now features ebooks.

Thanks for checking out the history titles that Diane and I wrote and published.

Thank you for sharing this newsletter with others.

Share The Diane Project

If someone forwarded The Diane Project to you, consider subscribing. It’s free, with newsletters once or twice a month.

When you subscribe, I’ll send you What Every New Cognitive Caregiver Needs To Do. It’s the guide I wish I had when I was starting on my journey.

Subscribe now

Thanks for leaving your thoughts and questions in the Comment area.

Above all, thank you for reading.

Aaron

Listen to me reading this story!

Now that I’m on my third issue, I suppose I should share a little bit about what Diane has and what “stage” we’re at with her disease. I didn’t want to do that right out of the gate because this newsletter is about cognitive caregiving, not illness.

Besides, the interesting thing about Diane isn’t what she has but who she is these days. When I’m in the room with her, I feel like she’s in some kind of liminal space where cognition isn’t required. She’s quiet but doesn’t seem bored. Sometimes she talks to visions I can’t see. Spiritually and emotionally, I sense that she’s all there.

And when friends or family drop in, I feel like the owner of Michigan J. Frog watching his pet burst into song. Visitors bring out a lively and talkative side to my bride. Diane’s former neighbor and work colleague, Sue Ellis, paid us a visit in November. Diane doesn’t remember working on textbooks in the ‘80s and ‘90s. But she was delighted Sue dropped by.

Anyway, to the medical business: Diane has Lewy body disease. It’s also known as Lewy body dementia and Dementia with Lewy Bodies. I’ll refer to it as LBD or Lewy. It’s been known to medical science almost as long as Alzheimer’s disease but has not been studied nearly as much.

Fun facts about Lewy:

It’s like having Parkinson’s and dementia. It’s two great diseases in one! It has to do with a certain type of protein deposit on the brain. Most people with Parkinson’s, if they live long enough, develop cognitive problems.

It’s probably the second most common form of dementia. I say “probably” because there are three different diseases all claiming to be the most common form of dementia after Alzheimer’s. Of the three, Lewy is the most complex, having fooled a lot of neurologists over the years. As diagnostic mastery of LBD spreads, the number of reported cases will go up. Already more than 1 million Americans are living with Lewy, compared with 5+ million with Alzheimer’s.

LBD was long misdiagnosed as Alzheimer’s or Parkinson’s. Why does this matter? Because there are meds you can take that help slow the effects of Lewy and there are drugs to definitely avoid with Lewy. Also, think about what kind of torture it would be to have a loved one experiencing symptoms that didn’t line up with what the doctor was telling you. We’re fortunate that our neurologist did his residency at Mayo Clinic, an LBD Center of Excellence, and knew what to look for.

There’s no cure for Lewy. There are some promising signs, though, like tests that will detect Lewy biomarkers in a person before they’re symptomatic. I know one reader of The Diane Project who has benefited from this testing. The “survival rate” for most people after they are diagnosed with LBD is 5 to 7 years, though I personally know several folks who have lived much longer.

There’s also a not-so-fun fact involving the history of LBD and antisemitism, which you can read about in the Endnotes.

So that’s your Lewy 101. For many LBD caregivers, these medical facts are not that relevant. In my experience, neuroscience has little to offer the cognitive caregiver other than a diagnosis. Last week we had our first neurology appointment in 14 months, and we only did it to get one of her prescriptions renewed. At least we were able to have a “video visit,” a nice convenience even if it did remind me of the Terri Schiavo case.

More helpful are the monthly house visits from a nurse-practitioner who works for a local palliative care provider. She takes Diane’s vitals, asks if there have been any changes, any falls, that kind of thing. She’s focused on Diane’s well-being. Because her agency also handles hospice care, it’s a load off my mind knowing that someone with experience will be there when it’s time to transition.

Really, though, the only person who truly understands caring for someone with LBD day-to-day is another caregiver. As it happens, one of the very few in-person groups of Lewy caregivers in the Midwest meets once a month at a pie shop about three blocks from my house.

That’s right, I belong to both a soup club and a pie group. If anyone would like to invite me to their sandwich league or quiche society, you know where to find me.

The pie group formed out of a Chicago-based Zoom I joined shortly after the diagnosis. Made up of the wives of men with Lewy, plus me, our group brings several decades of combined caregiving to the table.

These ladies will be the first to point out that if you’ve met a person with LBD, you’ve met one person with that disease. Everyone in the group knows what a screwball disorder this is. No two cases are the same. Some people with Lewy are immobile while others go to the gym for Rock Steady Boxing. Some hallucinate happy creatures, others hallucinate monsters, while many don’t hallucinate at all. And every now and then you get the retired dutiful employee who slips out of bed at 4 a.m. and drives downtown because they’re late for a meeting.

Our experiences are different but our journey is the same and our community is like no other. Much of the essential guidance I’ve gotten has come from this group, listening to their stories and sharing mine. I remember when I was debating whether to hire my first aide and telling the ladies that I wasn’t sure I needed one. After all, I had spent years being around Diane 24/7. One of them sweetly smiled at me and said, “That’s because you’re in denial.” She wasn’t wrong.

***

The fourth anniversary of Diane’s diagnosis was last month, and I decided to look back to see how her disease had progressed. There are two widely-used dementia staging systems: FAST, a 1-to-7 scale based on common symptoms; and DSRS, a survey that scores the patient on 12 different categories including memory, social activity and personal care.

I used these systems two years ago and determined that Diane was in moderate to severe dementia. Today, according to both measurements … she’s right where she was two years ago. Which makes no sense. Even from my too-close perspective, she’s obviously undergone many changes since then.

So I called Pat Snyder, a former LBD caregiver who now coaches and teaches other caregivers. She spent the better part of a decade on the Lewy journey with her husband John, keeping him in such good trim that their neurologist, Dr. Daniel Kaufer, encouraged her to write a book. That resulted in Treasures in the Darkness: Extending the Early Stage of Lewy Body Dementia, Alzheimer's, and Parkinson's Disease, and a new vocation for Pat.

She leads a monthly caregiving class in Wake Forest, North Carolina, which she repeats on Zoom and YouTube. Her ability to explain LBD in plain language (e.g., this 13-minute video) is one reason Pat was named the 2019 Lewy Body Dementia Association volunteer of the year.

“You can't stage this disease,” Pat told me. “It's too much of a roller coaster. The experts that I respect the most, I hear them saying ‘early,’ ‘middle,’ ‘late.’ That’s about as good as you’re going to get with LBD.”

While Alzheimer’s is a predictable, mappable disease, Lewy symptoms come and go, fluctuating and baffling everyone around the patient. “You can have what looks like a very advanced disease one day,” Pat said. “The next day, all of the sudden people are asking, ‘Are you sure he has dementia?’“

What I love about Pat is her positive attitude and her belief that resilience and hope are muscles that can be developed. Above all, she helps caregivers to become more proactive, whether outfitting their bathrooms or coping with stress and grief.

I called Pat because of something she said during a presentation at the Dr. Daniel Kaufer Memorial Caregiver Conference in 2023. She says it during almost every talk she gives, and it was like a lamp I could carry into the cave of advancing LBD.

I screenshotted it from her slide deck so I wouldn’t forget:

I wanted to ask Pat about staging LBD and what might set apart late-stage Lewy from earlier stages. She began by telling me a story about her husband, and instead of the familiar roller-coaster analogy she used a different image, one that I found both helpful and deeply moving.

“In last couple of years of his life, John would go into this sleep where he would sleep for three days nonstop,” recalled Pat. “I had a syringe that I had used to feed the kids baby food, and I would syringe water to wake him up, and then to get some fluid into his body. That’s all he was taking in over a three-day period, maybe a little applesauce. And then he would bounce right back. The caregivers were like, ‘Oh, yeah, this is what happens at the end.’ But that went on for months and months.

“I got to the point where I just kind of floated with it. You just float. You’re in the stream, you’re floating down the stream, you don’t know what’s coming. And eventually — over time — you learn not to let that rattle you the way it did earlier.”

Wow, yes, exactly.

As John’s disease progressed, Pat developed a strategy that she now advises all her caregivers to try. She calls it “personifying the disease.” You separate the disease from your loved one, give it a name (Lewy is good) and treat it as your adversary, one that can be outsmarted and outmaneuvered.

“Whenever there’s what I call ugly behavior — paranoia, anger, suspicious or nasty behavior — just automatically say, ‘Oh, that's Lewy,’” Pat said. “If I saw that look on John’s face when I came in the room, I would go, ‘Forgot something! Be right back,’ and I would just get out of there. You don't feed the monster. You don't give the monster any attention at all. And when you get out of the room, he” — the loved one — “gets a reset.”

In the early years of her illness, if Diane got upset, confused or aggressive for seemingly no reason, I would push back. This never worked, since it hurt my wife’s feelings. Pat’s insight was to see her loved one as entirely blameless and Lewy as this troublemaker who has dropped by their house just to stir the shit. As a female caregiver dealing with a larger, more imposing man, Pat may have had a keener sense of her own helplessness that led to the creative approach of personifying Lewy.

It took me longer to get to that awareness. In the early post-diagnosis “stage,” I was under the illusion that Diane’s disease could be managed the same way we had managed previous health challenges. Then the Lewy body roller coaster started up. This “stage” felt like a nonstop parade of changes, which were not only stressful and unpredictable but had a habit of exposing my shortcomings. After a lifetime of relying on my wits, humor and occasional temper, I was confronted with an adversary that was immune to my cognitive charms.

It took time, but I was eventually able to develop a kind of jiu jitsu with Lewy. When it’s coming on strong, I need to give way. Meet aggression with tenderness. Pat’s image of this “stage” — floating downriver —is perfect. I’ve had to learn to accept what’s out of my control and to gently navigate the current as I wait for my loving spouse to float back into view.

“One of the things I love to say to caregivers, because I found it to be so true: If you’ve given this your best shot — and nobody does it perfectly, ever, ever, ever — but if you’ve given it a good shot, you’re going to like yourself better at the end of it,” Pat told me. “Because you will have learned something about love that you probably could not have learned in any other way. You’re going to be able to love more deeply and have much more compassion, because you had to. You just had to.”

A few weeks ago I made a delightful discovery while tucking Diane into bed. Our routine is the same every night. I brush and floss her teeth, give her a few pills and change her into pajamas. In bed I get her flat on her back and pull up the covers. Then I turn off the light, sit next to the bed and gently rub her head.

I don’t know the science behind this (and again, don’t really care), but the surface of the skull right above one of the most damaged parts of her brain is now the source of her greatest tactile pleasure. Many times she’ll go slack-jawed or fall asleep while I’m rubbing her temples. I keep this up until my arm gets tired, then I’ll lean in to give her a kiss.

One night I switched the order around, doing the head-rubbing and then turning off the light. Coming back to the bed, I leaned in very slowly, not yet able to see her face in the dark. As I got close to her lips, so close that I could feel her chin, I heard/felt her smooching the air.

I was struck by a flashback. Hundreds of mornings and evenings, Diane would throw me this same air kiss. Lying in bed, me leaning in, her eyes closed but sensing my nearness, her lips reaching out: smooch. It didn’t matter if we actually kissed. For 30 years this was our secret act of ordinary intimacy. I didn’t realize how much I missed it until that moment, when it popped out of the liminal space where cognition isn’t required.

The next day, I leaned in again, eager to repeat the magic. But she wasn’t having it. Undaunted, I tried again later, and that time I got a smooch. It was thrilling, almost like a first kiss. So I started doing it every day — the kiss test. She doesn’t know it’s a test, of course, but she’s not the one being tested, I am. And I have to earn it. I can’t just swoop down and get a smooch on demand. Like any lover, I have to get her in the mood, which is challenging when Lewy is in the room.

One evening after supper, I noticed her becoming preoccupied with a hallucination. She began talking past me to this vision across the room. I asked her what was going on, which was silly because she can’t explain things. So I let her go on a while, listening to the anxiety in her voice build. Finally I took her hands, looked her in the eye and said emphatically that I loved her and that I wasn’t going anywhere. It was just her and me in the room and we were safe.

That did it. She fell silent. I sat with her, grateful that my abracadabra had actually worked.

Later, as I tucked her into bed, I began my routine, rubbing her head and then, in response to her low hum of pleasure, moving down her body, making little sparks in the dark as I rubbed her chest and legs over the covers.

And lo, a spring of clear words suddenly flowed out. “It was a great day,” she said happily, “if you have the right attitude.” And then she smooched the air. Smooch smooch. Then she was out.

Endnotes

One of the great what-if’s of history is how much closer we might be to a cure for dementia today if not for antisemitism.

Lewy disease, like Alzheimer’s, is named for the scientist who discovered it. Friedrich Lewy was a 25-year-old Jewish researcher two years out of medical school when in 1912 he published the landmark paper describing oddly-shaped proteins that he had found while autopsying the brains of patients with Paralysis agitans. Researchers later named the paralysis Parkinson’s disease and the proteins Lewy bodies. Lewy was relieved of his professorship in Berlin in 1933 after the rise of the Nazis. He emigrated to the U.S., changed his name to Frederic Lewey, and shifted his research away from cognitive disease.

Meanwhile, following the death of Alois Alzheimer in 1915, his leading proteges became true believers in eugenics theory. They argued that Alzheimer’s disease was caused by “hereditary degeneration” which could only be eliminated by controlling inferior breeds of people. One ardent promoter of Alzheimer’s work became Hitler’s commissar of racial hygiene.

And things got no better post-Hitler. In his book The Problem of Alzheimer’s, Jason Karlawish laments that after World War II American psychiatry showed little interest in the biological causes of mental illnesses. Instead the profession rushed to embrace Freudian theories of neurosis (i.e., anxiety and depression), and to create lucrative practices around the “talking cure” of psychotherapy, which was of no help to people with dementia.

Karlawish sums it up nicely:

Throughout the world for much of the twentieth century, the diagnosis and treatment of dementia in an older adult essentially fell between the two professions who cared about the brain: neurology and psychiatry. It was neglected.

Land of Linkin’

• In L.A., “what fills my heart in the face of destruction are the thousands of eager helpers”

• A provocative reflection on Jimmy Carter’s empathy problem

• Not one but two eulogies read at Carter's funeral were written by men who themselves had died

• Norway is going to rule us all someday!! (and we’ll love it)

• In local news, the only Evanston man to serve as Vice President was also the only VP to write a hit song

• Soup club regulars tell me I outdid myself with this black eyed pea Ethiopian stew

• Wisely, the editors of the New Yorker chose the early years of SNL for its lengthy excerpt from the new Lorne Michaels book

• “A Kiss To Build a Dream On” was taken from Satchmo’s 1968 BBC concert that was remastered and released in 2024 (by the way, it’s “Lewissssss” not “Lewy” Armstrong)

Thank you’s

TDP’s Bookshop links benefit the Robert H. Levine Foundation for Lewy Body Dementia Research.

Diane and I wrote and published a number of books on American history which you can buy directly from us.

Yes, you can forward this newsletter — I encourage it! If someone forwarded The Diane Project to you, consider subscribing. It’s free, with newsletters once or twice a month.

When you subscribe, I’ll send you What Every New Cognitive Caregiver Needs To Do. It’s the guide I wish I had when I was starting on my journey.

Thanks for reading,

Aaron

(That’s me reading the story! To hear them all, subscribe to the podcast.)

I’m Aaron, full-time caregiver to Diane, who was diagnosed in 2020 with Lewy body disease. I write up a bunch of drafts which eventually turn into an issue of The Diane Project. Here is the first one. And now … the second. As the kids say, be sure to subscribe.

It was the morning after the election. I awoke at 4 a.m. to answer a call of nature — in this case, my wife’s. She calls to me most nights. I reach over and touch her to put her at ease, then get up and walk to her side of the bed. She’s always happy to see me. The feeling is mutual.

On this night we made our short roundtrip to the bathroom, then I put her to bed and shuffled into the kitchen. I like going to bed with Diane, and retiring at 8:30 buys me a lot of sacred morning time. But I missed out on the election results. So I put in my earbuds and turned on Sky News. I listened long enough to make coffee, then shut it off.

Over breakfast we watched a little more coverage, and I explained the results in simple terms (“the black lady and the Minnesota governor lost”). Then I switched the TV to music, and she listened while I made soup.

Our faith community has a sister farm in western Illinois, and it was their butternut harvest that week. Someone brought me a massive squash that was like holding a gallon of milk. They could’ve swaddled this thing and used it in the Christmas pageant. But I had 8 quarts of soup to make, so I used it all.

At 10 a.m. one of Diane’s aides arrived. I took my stock pot off the stove, loaded it into the soup wagon and headed to work.

I rent a desk at Office 805, a co-working space that’s a bicycle ride from my house. The owner, Dan Bleier — that’s him on the left — is a gregarious, funny, generous-minded person who exemplifies Evanston. His longtime friend and co-conspirator, Charlie Davidson, has his office next to the break room, where the three of us kibbitz.

A few weeks ago Charlie walked in and found me making a post-marathon feast. “You know what we should do?” Charlie said, pointing to the Instant Pot. “We should do soup.” And lo, 805 Soup Club was born.

On this day I’ve made chunky butternut squash soup. Someone else brought a huge roaster filled with chili.

Attendance at soup club has grown steadily, though Charlie and I have had to get on Dan’s case to promote it more. After all, the first rule of soup club is: Talk about soup club! (Dan shrewdly hired me to be his communications specialist at no pay.)

The second rule of soup club is: Talk about the soup! Everyone compliments the chefs and asks how they made their soup. (I added chickpeas for protein and farro for texture, then used my stick blender to make a chunky puree.)

I doubt that homemade soup will cure a post-election hangover, though I suppose it couldn’t hurt. But no one in soup club that day even mentioned the election. The mood was relaxed and chatty. Everyone seemed happy, even those of us who voted for the losers.

A friend texted me, with sincere feeling, “Hope you are okay this morning.” The day after the election I kept getting hints that others around Evanston, which went 92 percent for Harris, were struggling with the results. The local college was even offering “post-election wellness spaces” to help students cope with their loss.

I was one of the 92 percenters. What right did I have to enjoy soup with these people, some of whom (I’m pretty sure) voted for Trump?

For one thing, like most of my Democratic friends, I’m a well-educated U.S. citizen. So it’s unlikely my world will be rocked by anything the next president does. There will be policies that I’ll strongly oppose. But I’m a firm believer that past is prologue, which means Trump 47 will be a crapshow of self-serving noise and chaos, just like Trump 45 was.

For another thing, my priorities have changed. I’m currently focused on the 16 hours or so per day that I spend on caregiving duty with Diane. And once it became clear that the election would be Trump’s to lose, I had to take stock of how much psychic energy I wanted to spend on this guy.

Fortunately, my wife could help me answer that question.

When we lived in Kansas City, Diane and I had a nightly ritual around the TV. I made dinner while we watched Jeopardy!, then local news, the network news and finally the NewsHour.

Starting about a year after her diagnosis in 2020, Diane gradually lost interest in the news. Nowadays a few minutes is all she can tolerate. One of our aides was watching the NewsHour with her recently when she said in a perfectly clear voice, “I don’t understand this.”

About a year ago we shifted to a new nightly ritual: music videos. Classical, jazz, folk, gospel, early female pop — there’s endless variety on YouTube and for 10 bucks a month, it will skip the ads.

One fine day in late spring or early summer, we were on the couch listening to music. I was also checking the news on my phone. Suddenly Diane turned to me and said, “What’s going on?”

Nothing was going on. But a story I thought I was reading to myself had provoked me; a muscle twitched or I muttered something. I was so absorbed in the story that I hadn’t noticed my reaction, but she had.

This kept happening over time. I could tell it was upsetting her. Each time I assured her that nothing was going on, but she didn’t always buy it.

And then I had one of my aha moments. Let me try to explain it.

As a cognitive disease progresses, a person often loses their inhibitions. That happened to Diane starting about a year after her diagnosis. If I said something she objected to, or did something she didn’t want done, she would quickly get upset, profane, emotional.

At first I was taken aback. (Once I said, “That escalated quickly,” which she didn’t appreciate.) It seemed like overreacting. Then I learned from other caregivers that this is quite common. I had to accept this change and adapt to it.

I began to view her hypersensitivity in a new light. Like all couples, we had our squabbles. We tried to fight fairly and make up lovingly. I was the hothead, she was the restrained one. I got a lot of feedback about the tone of my voice. I tried to do better, didn’t always succeed.

But now here she was, no longer restrained, giving it all back to me with interest. And the kicker was, I couldn’t argue with her anymore! If she was upset, that was my problem. The only way to restore order was to apologize profusely and be kinder.

With great regret I realized that these were behaviors I should’ve been modeling long ago. But better late than never.

All of this was on my mind as I sat on the couch with her. Whenever I would check my news app, something I read or listened to would trigger me. This reaction would be upsetting to Diane. My attempts to explain away my reactions were useless. She didn’t want to hear about the story I was reading. Her life is lived in the liminal space where cognition is no longer necessary. If I was going to be with her, I needed to respect that. I needed to put her feelings above my interests. It was really no different than a marriage argument, and it was an argument I had to be willing to lose.

So … I deleted my news app. I also got Facebook off my iPhone screen, so now I almost never open it. I trimmed my newsletters and podcasts to a well-tempered few (the list is in the endnotes below).

And with that, election madness more or less vanished into the ether. Maybe it was a coincidence, but Diane and I are having our best stretch of days and nights since our caregiving journey began. And I don’t think I’ve missed that much.

Well, there’s one thing I do miss — our nightly news ritual. In our big house in Kansas City, we’d pass each other during the day like ferry boats. Then we would come together to eat, watch and talk. I kept the remote handy. She’d say, “Pause it,” and we’d talk for a minute or two. Maybe about something on the news, maybe something else. I’m not sure our nightly ritual connected us to our world so much as it reconnected us to each other. I do miss that, terribly.

Cognitive caregiving is a lonely task. And loneliness, according to the U.S. Surgeon General, is as hard on a body as smoking 15 Camels a day.

Others may disagree, but I think the comparison is dead-on. When we doomscroll instead of making real-life connections, we make ourselves mentally and physically unhealthy. And just as Big Tobacco preys on heavy smokers, the tech industry profits off its most addicted users by continuously feeding their outrage and fears.

Thanks to the work of Jon Haidt and his book The Anxious Generation, we now have solid evidence that social media does unique harms to the mental health of teenagers, especially girls. But not a lot of people are asking the follow-up question: If it’s doing that to our kids, what’s it doing to the grownups?

The tragic aspect of our obsession with our screens is that it leads to thoughts and behaviors that go against our nature. A growing consensus among scientists is that we’re hardwired to be optimistic and to connect with others — not just family and allies but neighbors, communities, even perfect strangers. Friendliness is in our DNA.

Several excellent books on the topic have come out in recent years, but the one I want to tell you about is Humankind: A Hopeful History, the 2019 global bestseller by Dutch journalist Rutger Bregman. Humankind was one of the three most influential books I read in 2024, and was very helpful as I was pulling away from my lifelong media habits.

If you’re a regular watcher of 60 Minutes then I guarantee you have seen stories based on chapters from Bregman’s book.

One is about the long-forgotten saga of the “real Lord of the Flies.” A boatload of boys from Tonga washed up on a deserted island in the 1960s and wound up doing exactly the opposite of what anyone who had read William Golding’s novel would have expected. Instead of competing viciously for the island’s scarce resources, they cooperated, handled disputes peacefully and lived large. When finally rescued, the castaways were found to be in excellent health and even better spirits.

Bregman also writes about Brian Hare, whose research into the emergence of dogs from ancestral wolves was too irresistible for 60 Minutes to pass up. Hare’s thesis is that the least vicious wolves began cooperating with humans and, as their friendliness was rewarded, they evolved into dogs.

As Bregman writes, Hare was inspired by a long-running Russian experiment that turned silver foxes, a completely wild breed, into docile pups through selective breeding. This experiment was vital to understanding why Homo sapiens became the dominant hominoid while our rivals, including Homo neanderthalensis, died out.

“The Neanderthal brain was, on average, 15 percent larger than our brains now,” writes Bregman. “We have a MacBook Air, and they got a MacBook Pro.” Neanderthals were cooks and artisans, “astoundingly intelligent,” not to mention ripped as hell.

Until recently, the leading theory behind their disappearance is that that Homo sapiens wiped them out. Yuval Noah Harari, in his book Sapiens, called it “the first and most significant ethnic-cleansing campaign in history.” Harari admits his proof is thin — mostly smashed Neanderthal skulls — but as Jared Diamond noted in his review of Harari’s book, “murderers have been convicted on weaker circumstantial evidence.”

The fact that Harari and Diamond have written bestsellers that reinforce negative notions of human nature should serve as a reminder that bad news doesn’t just live on our screens. As Bregman notes, two generations of readers were influenced by the Richard Dawkins book The Selfish Gene, which ended with the author’s exhortation, “Let us try to teach generosity and altruism … because we are born selfish.”

But it turns out we aren’t.

The problem with the Neanderthals, Bregman writes, is that they were rugged individualists. They hated cooperating. The smaller-brained Sapiens formed alliances, trade networks, dynasties. They weren’t smarter or more clever, but they were friendly — “Homo puppy,” as Bregman puts it.

Or as Brian Hare, the dog evolutionist, explained to Anderson Cooper,

“There were at least four to five other human species. And the question then becomes, ‘Well, why are we the only one left?’ … What dogs point to, is that we were the friendliest species that ever evolved among humans. And that we survived because we are friendly.”

Okay, then why are human beings such turds to each other? If our DNA is toward friendliness, how do you explain Bashar al-Assad? It’s complicated, and that’s why Humankind is a book and not a tweet. But basically, our desire to connect with others can be manipulated. We can be drawn into groups that view other groups with suspicion, fear and even hatred. Tribalism is great if you follow a sports team, not so great if you follow a fascist ideology. Bregman explains all of this in an ingratiating and compelling style, with help from a lively English translation by Elizabeth Manton and Erica Moore.

The heart of the book, in my opinion, is in the early chapters where Bregman takes on the pop-culture-driven belief that humans are awful by nature. One by one, he opens up those old depravity tropes I was raised on — not just Lord of the Flies but the Milgram Experiment, the killing of Kitty Genovese, the “tragedy of the commons” (i.e., why we can’t have nice things) — and peels back the layers to expose a shocking pattern of shoddy research, bogus reasoning and lazy journalism. Well, I guess it’s shocking if you haven’t been on X lately.

Bregman explains that, while we are indeed wired for friendliness, we have another evolutionary strategy known as negativity bias. Also called the “fight or flight” instinct, it was meant to be used in rare emergencies. The problem is that Big Tech has developed a lucrative business model around triggering our fight-or-flight instinct 50 times a day.

“It’s by tapping into our negativity bias that these digital platforms make their money,” Bregman writes. “Because bad behavior grabs our attention, it’s what generates the most clicks, and where we click the advertising dollars follow.”

And each time we click, we’re ensuring more helpings of those same messages, each of them reinforcing our negative thoughts. In this way, technology nurtures us to contradict our nature, and it becomes an article of faith that humans suck. Among other harms, thinking that way is really stressful — like, 15 cigarettes a day stressful.

Bregman’s remedy is to avoid TV news, turn off push notifications and read more nuanced pieces instead of quick hits. Above all, he writes,

“Disengage from your screen and meet real people in the flesh. Think as carefully about what information you feed your mind as you do about the food you feed your body.”

Food for thought. Which reminds me, there’s one more rule to soup club:

It’s never about the soup.

The soup wagon. I’ve been pedaling this around since July. I love leaving the CR-V at home and using the soup wagon to haul groceries, garden supplies, the weekly CSA drop and books from our warehouse in Skokie, as well as the eponymous pots of lunch.

If there’s an object that captures 2024 and the work I did connecting with people, it’s this Amazon purchase and the bicycle it’s attached to.

I’m lucky in that I married a woman who kept me from crawling into the shell of my own head. Diane wasn’t a bon vivant or the life of the party, but she knew how to connect with others. She tapped into my friendliness gene and made me a more social animal.

And so, as we moved into a new neighborhood and my emotional and intellectual ties to Diane frayed, I knew what I had to do.

Our backyard house faces an apartment building. Even before construction was over, I’d gotten to know some of our neighbors. One was a delightful woman who taught at a community college and was, like me, a cancer survivor. Her parking spot was in the alley, and we often talked as she was coming and going.

Earlier this year she confided to me that her cancer had returned. “I’m telling you,” she said wearily one morning, “radiation is kicking my ass.” A few weeks later I got an urgent text from her. She was going into hospice and needed help clearing out her apartment.

When I arrived with a crew from my faith community, she was lying on her bed, barely able to gesture. She told me to take what I wanted. I took her old three-speed bicycle.

And now it’s pulling the soup wagon.

Endnotes

Her name was Sabine Gourgue. I would say, “May her memory be a blessing,” but it already is. You can still contribute to her family’s GoFundMe.

Some readers may reasonably ask how I can just switch off a man who, in the past week alone, threatened to sue media outlets, take back the Panama Canal and ship every undocumented immigrant home. I apologize if this answer seems rushed, but I really wanted to get this thing delivered by Christmas.

Four years of presidency proved that Trump is clearly unfit for office, by which I mean he doesn’t know how to govern. To do whatever nutty thing he just promised to do on Truth Social, let alone anything in Project 2025, requires discipline and organization. A president has to work with Congress and follow the Constitution. By this measure he failed miserably in his last term. His two signature achievements — the tax cut and Supreme Court nominations — simply required a warm Republican body in the Oval Office. Mitch McConnell handled the rest.

The immigration issue is one that’s sensitive for me, as the friend of undocumented persons. I can only imagine how exhausting it must be for them to live with the constant threat of deportation. But that feeling didn’t start with Trump. The Biden Administration deported more persons in 2024 than Trump did in his entire term of office. Obama was the “deporter-in-chief.” I just think it’s important to keep in mind that with Trump, perception and reality are two planets that rarely align.

The popular Substack writer Matt Yglesias adds,

“Trump thrives on an atmosphere of hysteria and, to an extent, even markets himself as a guy who’ll do abuses of power to help enact his followers’ revenge fantasies. I think it’s best to try to remain even keeled and to remind people that while a wide range of outcomes is possible, the most likely one by far is that Trump abuses power mostly for the purposes of corruption and self-enrichment.”

I get most of my news from a diverse range of newsletters and podcasts, in order of importance:

• The Dispatch

• Prof G Podcast with Scott Galloway

• Evanston RoundTable

• Reasons To Be Cheerful

• Free Press

• The aforementioned Yglesias

• Chicago Sun-Times

I also take newsletters on culture and life, including Anne Helen Petersen’s Culture Study (which has a strong reader community) and the surprisingly great Arnold’s Pump Club. I might spend more time following the Chiefs and the NFL than the news; this YouTuber cracks me up.

Here is the Bookshop link to Humankind; you can check out the ebook with Libby. All my Bookshop links 100% benefit the Robert H. Levine Foundation for Lewy Body Dementia Research. Other titles I’m recommending include The Power of Regret, which I think is Dan Pink’s best book; and Second Class: How the Elites Betrayed America's Working Men and Women, a deeply reported alternative to Hillbilly Elegy for the MAGA-curious.

Land of Linkin’

• This 2020 podcast offers a good primer on negativity bias

• Watching your party lose an election is crushing, but it still beats being a Bears fan

• Now I can finally get back to reading Carson the Magnificent — soooo good

• A charity I support is helping the longest wrongfully-imprisoned woman in U.S. history to rebuild her life

• The Dick Van Dyke-Coldplay video is a delight

• Rickey Henderson, RIP; I loved his game

• In local news, here’s a wonderful profile of my 805 officemate who joined the circus at 17

• Our friend Harriet Frazier, who wrote five historical books after age 65 including Slavery and Crime in Missouri, has died at 90

Finally …

This newsletter is free. I said I was aiming for two to three of these per month. I’ll keep aiming, but it might take a while to hit that. No editor ever asked me to write about myself.

Comments are on. I’m not looking for attaboys so much as nuanced and interesting feedback. (You know that tendency to ignore the 99 nice comments and focus on the one that says you suck? That’s also negativity bias.) Also, I’d love to see commenters making connections with each other.

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Oops! I’m sure her eyes were smiling under there. On behalf of our family, happy Chrismukkah and take care. — Aaron

Hey there! If you’re new to The Diane Project, here’s a quick overview. I’ve completed one season of TDP and posted six stories. You can read them in order by clicking the “Next” button at the end of this story. If you prefer having me read the story to you, click the play button in the widget above. You can also subscribe to TDP as a podcast. — Aaron

Welcome back, longtime readers. Everyone else, glad to have you. Without further ado, may I introduce the star of our show.

Diane is my wife of 29 years, the woman to whom I owe everything, and as I write this she is sitting beside me on the couch, snoozing peacefully. It’s midnight in the high-ceilinged main room of our small contemporary house, located half a mile north of the border with Chicago.

If I were to step outside into our alley and walk to Custer Street, I could see the brick building where we met in the winter of 1990. It’s a former taxi dispatch station that was bought by a bunch of thrifty Mennonites and turned into a church. Five years after we became friends, we got married there.

In the fall of 2020, my bride was diagnosed with Lewy body dementia. Diane always told me her mother was at her best in a crisis, and in many ways she is her mother’s daughter. Our response to this devastating news was to snap into action.

We had moved to Kansas City in 1997 and were living in a beautiful old Arts and Crafts house. We loved that place, but we knew the time had come to sell. Diane was not only experiencing cognitive loss, but eventually she would develop Parkinson’s symptoms as well. Lewy — it’s two diseases in one.

One morning over coffee, Diane announced that she’d woken up with a word on her mind. The word was Evanston. I knew exactly what that word meant: We would go back to Illinois to live in the community surrounding the brick church, the most caring community we had ever known. I was all-in. The housing market was tight, but with some allies and imagination we made it happen.

And now here we are, on the couch. Lately Diane has been waking up in the night. I don’t know why and she can’t tell me. But I’m on the case. Since 2022 I’ve been her full-time caregiver and I’m not so terrible at it anymore. Using trial and error and calls to our palliative-care nurse, I’ve come up with some options. Tonight we had a win.

I should celebrate by crawling back into bed, but I linger a while by her side, listening to her breathe, savoring this moment. Forest rangers like to say they are paid in sunsets. Moments like this are part of my compensation. The biggest reward, though, is knowing that Diane is safe at home and that I’m making life as pleasant for her as I can. 

I’m a former television critic for the Kansas City Star and Primetimer. Diane was a senior editor in educational publishing before her midlife pivot to history. She earned her master’s degree and finished her first book in 2007. Five years later I quit the newspaper to go into business with her, giving talks and publishing books on American history.

We met and married at Reba Place Church in Evanston, Illinois. Reba is an intentional community with a rich and unique subculture. After 25 years in Kansas City we returned to Evanston and built an accessible house in the backyard of a Reba-owned property.

Those two paragraphs were written on March 13 — more than seven months ago. Since then I have been trying to launch a newsletter about caregiving. I’d like to say that actual caregiving duties kept getting in the way, but that’s not true. The first three years after diagnosis were very challenging. I had to adapt to a progressive disease while downsizing and moving and building a house. But the dust has settled on all that, and I now have great care providers who come in during the day. So I have the time and headspace for this.

The struggle, rather, has been trying to write without the help of my muse and my best editor. Diane and I were a team from the start of our marriage, and it was a great day in 2012 when we began working together. After her diagnosis, we talked about maybe creating a podcast or YouTube channel about our Lewy journey. Always thinking ahead, Diane told me that if she couldn’t take part in the project, I could do it without her, on one condition: I had to preserve her dignity. As Bill Maher would say, that is literally the least I could do.

Long story short, I overthought this project, and as a result it took way too long to launch. I tried out a bunch of concepts and even designed a few logos (a fantastic way to kill time) before coming up with The Diane Project earlier this month. Well, at least I have a long list of story ideas now, as well as a clearer idea of where I’m going.

And hey, we’re 800 words in and you’re still reading, so that’s a win.

***

It took me two years to admit to anyone that I was a caregiver. Even then I had no idea that I had joined a huge invisible army of caregivers until I started work on this newsletter. Roughly 42 million Americans provided unpaid care for an adult over age 50 in 2020; that’s up from 34 million in 2015.

At least 11 million of us are taking care of someone with cognitive loss. On average each of us provides 1,000 hours per year of care, at the expense of paid work, relationships, mental health and sleep. Dementia caregivers willingly make these sacrifices to keep their loved ones out of institutions. One study found that 90 percent of those living at home with neurocognitive illness had an unpaid caregiver.

Caregiving has been around as long as humans have been around. But many observers say we’re in a caregiving crisis now, owing to broader social trends.

First, folks are living longer. Older couples wind up having to take care of each other, and when one of them has cognitive loss, the stress can become too much. Or if they have a child nearby, she (it’s almost always the daughter) finds herself sandwiched between caring for parents and kids at the same time. These caregivers are exhausted and suffering for lack of support.

Second, we spend more time alone than previous generations. Thanks to lower marriage and birth rates, there are more single-person households in the U.S. than married-with-children households. Being alone is bad for your health, as numerous studies have shown. Covid only made things worse.

Loneliness is a double whammy for dementia. It’s adding to the number of people living with cognitive loss and making it harder to find caregivers for them.

“Humans used to be surrounded by more people, family and non-family,” writes Elissa Strauss. “They used to be more invested in community, which curtailed loneliness and benefited care. When we are other-directed, we place more value on acts of togetherness, including care, and we also invest more time and energy into caring for the caregiver and sharing the burdens of care.”

Strauss is the author of When You Care: The Unexpected Magic of Caring for Others, which I loved so much that I called her up for my first author interview for The Diane Project.

Like me, Strauss sees the caregiving crisis as something that needs to be addressed both “from the top down and the bottom up.” Top-down policy changes will be slow in coming, so all of us “need to work on creating new narratives around, and understandings of, care.”

For too long, we have treated caregiving “as an obstacle to the good life” rather than “an essential part of a meaningful one, individually and collectively.” Strauss asks,

“What if we saw caring well as more than obligation? What if we also saw it as a privilege, opportunity, and right? That will only happen when we acknowledge the power of care.”

Strauss has written about caregiving for The Atlantic, New York Times, Glamour, Elle and Allure. Yet it wasn’t until she became a new mom that she had to face her own negative feelings about leaving the workforce to take care of others. That led to the reporting that produced her new book and Substack.

“When I dug into research about care’s effect on our health, I discovered that in the right conditions, caring for others can be very good for you both physically and psychologically,” Strauss told me. “Caregiving is now being associated with longer lifespans, lower inflammation and finding one’s life meaningful. It is also associated with lower suicide rates among men. Unfortunately, we need to keep fighting for these right conditions.”

I appreciate that Strauss includes dementia care in her book alongside more socially accepted forms of care, like motherhood. The reality, though, is that cognitive care is something a hypercognitive society devalues because the thought of losing brain function fills most people with existential dread.

Who can forget Dr. Ezekiel Emanuel, defender of Obamacare, arguing that people over 75 should forego extraordinary medical treatment (i.e., die as soon as possible) because they are “declining” and “no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic”? This is a huge bee in my bonnet, and I’ll return to it in future editions of TDP.

I interviewed Elissa Strauss in … (checks notes) … late May. Here are the edited highlights.

The reason I latched onto your book was the tone. It’s there in the subtitle: The Unexpected Magic of Caring for Others. A lot of journalism around this topic of caregiving is simply alarm-ringing: reporting out some numbers, telling stories about overwhelmed caregivers, then quoting a few experts who echo the journalist’s narrative which is, “another huge crisis that can only be solved by government.”

Elissa Strauss: We have to be catastrophic about everything to make any noise. Obviously we need more caregiver support in this country. There's no question about it. But I think it's a real lack of imagination when we deny that care is this thing we do. It's part of our lives. It’s always going to be inconvenient, but we need to accept it as part of our lives and stop trying to fight it.

We may never get the government support we actually need until we also have a cultural conversation about what does it look like to put care back in the center of the human story. It’s been systemically left out, not just of our economy, our GDP, but excluded from our pulpits, whether at church or synagogue or mosque. Until we widen the aperture of care, and learn how to mentally accept caregiving as part of life, I'm not sure we're really going to figure out the practical solutions.

How did motherhood get you interested in writing about caregiving as a practice, not just a policy matter?

Strauss: I was writing a lot about the lack of structural support mostly for parents, but also for caregivers as a whole. I wasn't ambivalent or conflicted about having kids, and luckily I didn’t struggle with postpartum depression or with connecting with my child. But I did have this fear that motherhood would make me less interesting, less relevant, less cool. And it took me a beat to realize that, while I was writing about how our culture didn't value care, I myself did not value care. I lacked curiosity about care. And I thought, how could I sit there and complain about how no one respects care when I myself really didn't respect care?

I think we generally know infanthood as a time of deep dependency. We're not shocked when we bring home our babies and they are dependent on us. That expectation is built in. At the same time, people are totally shocked by motherhood! Fifteen years after you leave your childhood homes in a state of total independence, you get put in this situation in which human dependency inserts itself in your life and it feels like an assault.

My experience caring for my sons has been profound — in psychological terms, in spiritual terms, in philosophical terms. And the more I spoke with other caregivers, the more I realized there's so much richness and wisdom that comes from the experience of care.

The way we parent in this country is like the way we care in this country, so siloed, so alone with not enough support, often with our financial security at risk. That is terrible! But until we pull care into our narratives of who we are and how we live in this world, we're not going to have the conversations we need to get that practical support. And we're not even going to really understand what kind of practical support will actually serve us as caregivers.

So often care is just flattened into portraits of either saintliness or burden. It's these two poles of, “Isn't it so wonderful? This person's so giving,” or else we're totally wiped out. If we just flatten care and treat it as pure burden, we're not doing care any service at all. At all. I think about how we talk about our relationships with our friends and our spouses when it's not a care relationship. We allow for so much complexity and richness and tension and friction. These things are all fundamental parts of human relationships, but not when it comes to care.

Caregiving is filled with friction, but that friction can be generative and productive and illuminating. It can also be depleting and challenging without benefits. On the whole I think caregiving makes you interesting. But you would never bring it up at a dinner party. If someone hikes Mount Everest, everyone's like, “Ooh, tell me everything. What was it like?” But if someone's caring for a partner with dementia, no one wants to hear this. Why is one human challenge so elevated in our culture and the other human challenge so diminished?

You write about being a stay-at-home mother and how those first four months were especially hard — but then, once you got through that, there was this reward. You were emotionally, intellectually, linguistically bonded with your child. You had a stake in their future. With dementia, it's literally the reverse. Your loved one loses their intellectual ability, loses their language. They may even lose their emotional bond with you.

You see this reflected in public attitudes. Let’s say there was a mother and a child in a park you were walking through. And then at the other end of the park was an adult child with his mother who had dementia. These are both caregiving situations, but people’s responses to them are totally different. How do we get past that?

Strauss: We need to put front and center the reality of dependency in our lives. Most of us spend the majority of our lives on one end of a dependency relationship. And in the book I tried to speak to as many different caregivers with as caregiving experiences as possible to include those stories. I certainly didn’t want to idealize or romanticize it, but I wanted to make space for the fact that people had positive feels. They felt so good about being able to just give love and care to these people they loved, even when their cognitive ability declined.

I spoke with a man who had conflict with his father his whole life, huge political differences — a cranky, judgmental father, according to the son. When the father got dementia, there was a softening that happened. And actually it was very healing for him. These are voices that are trying to show that dementia can be a lot of different things. I have a close friend, Courtney Martin, whose father has dementia. She writes about caring for him with such tenderness and openness that I'm crying every time I read it. But I am also shocked that I've almost never heard this. This is not the story we hear.

Someone I interviewed in my book spoke about how he took his wife with Parkinson's to restaurants. And sometimes people would say he was a hero, and he didn't love that, because he didn't feel like he was being a hero. Other times, people would make him miserable because someone with Parkinson's is not our idea of an ideal diner. That's just messed up. That's a culture that's in denial of the fact that human bodies aren't always working exactly how we want them to, and it needs to change. It's not going to make it all better, but getting rid of that taboo could certainly help.

***

Reading over my interview with Elissa Strauss, I realized that something she said had a lasting impact on my own life.

It was when I asked if there was any low-hanging fruit that we could go after while we waited for Congress to get its act together. Strauss thought of two things.

First, private employers could put an end to the practice of scheduling employee shifts at the last minute. “If you’re a parent or have to care for an adult parent with dementia, how can you ensure they’re cared for while you’re working if you get your schedule at the last minute?” she said.

Her second suggestion cut me to the quick.

“I would love for institutions to do more to make space for people who are dependent as well as their caregivers,” Strauss said. “My synagogue makes a point that, if you move slowly, if you think slowly, you are welcome at our synagogue. In fact, there are all kinds of people who go up to the bema to help the rabbi lead the service. People with cognitive disabilities, people with physical disabilities — if it takes them a long time to get there, no one's in a rush. When you really make space in a society for people who are dependent, it liberates everyone from this myth that only people who are independent can participate in society. The way that affects the caregiver, we cannot overstate that.”

At my church, we also have a lot of audience participation. It can take the better part of a minute for someone to get from their seat to the microphone at the front. This slowing-down of the service was driving me batty. The old man in my head would shake his fist at the sky and yell, “They know it’s their turn, they know they’re slow, why don’t they get up sooner??”

As soon as Strauss mentioned this exact tendency in her synagogue and how they dealt with it, I realized I had to do a reset. I saw, for the first time, that my impatience at church was being mirrored at home. As a caregiver I was often moving too fast for my wife and I needed to slow the F down, for her sake. Learning to appreciate slowness is a gift, for which I’m grateful to Elissa Strauss.

You can order When You Care: The Unexpected Magic of Caring for Others using my Bookshop.org link. All proceeds of Bookshop sales go to the Robert H. Levine Foundation, which my friend Barbara Levine began in 2022 to aid Lewy body dementia research.

Land of Linkin’

Now that I’m back in Illinois, I get to revive the Internet’s oldest pun.

• We love our high-performance house and low energy bills. Sadly, voters just aren’t that interested in climate change according to YouGov (a highly rated pollster).

• Hallmark’s being sued for age discrimination by its former casting director, who alleges the TV channel wanted to replace Holly Robinson Peete and Lacey Chabert (!!) with younger versions

• The Menendez Brothers, convicted of murder in 1996 following a sensational trial, may be set free in weeks after two Netflix series revived interest in their case

• In local news, Evanston has the best city water

• New rare recordings of Charlie Parker playing “very relaxed” in Kansas City just dropped; my favorite is a 1944 cut of “My Heart Tells Me”

• I am ALL-IN for a Jason Kelce-hosted late night show

• Sub-2:10 too good to be true? I just ran the Chicago Marathon, where Ruth Chepng’etich shattered the women’s world record. Was it legit? Probably! The Real Science of Sport Podcast analyzes her historic run in detail.

My resource for new caregivers

The Diane Project is a free newsletter. I’m not going to set up a paid subscription. There will be Bookshop links to benefit Lewy body research, and if I ever do finish that book, I’m sure I’ll be hawking it nonstop. But you won’t be under any obligation to buy it. Whenever that is.

Instead, I’m giving away a resource to encourage people to join The Diane Project mailing list.

If you or someone you know is starting on the journey with a loved one who has a neurocognitive illness, this is the guide that I wish I had when I was starting out.

When you subscribe, I’ll send you an email with the link to the guide.

Subscribe now

If someone you know is starting out on the care journey, I’d be grateful if you forwarded this email to them, or just pointed them to The Diane Project.

(If you’re subscribed already, you should have gotten an email from me with the link to the guide. Hit me up if you didn’t.)

Endnotes

I’m aiming for two to three newsletters a month.

I have likes and comments turned off for now. You can reply to this email or click here to send me feedback.

All of our books are for sale.

You can show your support for TDP by donating to the Levine Foundation. Barbara Levine, who also started the Lewy spouses’ support group that I belong to, is a tireless advocate for Lewy education and research.

Thanks for reading,

Aaron