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Last month it was mid winter break from school in Seattle, and I took my brother Leif, who is 50 years old and has Down Syndrome, to Disneyland with my husband and our three children. Leif is a huge Star Wars fan - with an affinity for the Dark Side - and loves Spiderman. He had some money saved up and has enjoyed family Disney trips in the past, so I wanted to give him that experience again.

I was excited, but also nervous about tending to Leif’s needs while traveling in addition to our three children. His needs are higher than the average person with Down Syndrome that we often see portrayed in the media. His verbal skills are limited and he has OCD. Imagining how I would juggle everything required when it came to his medications, mobility, and physical care in a high-sensory environment gave me some anxiety.

At first I resisted the idea of bringing a staff person along to help. I thought about how my mom always traveled alone with the two of us, so certainly my husband and I should be able to do it, right? Shouldn’t I be able to handle bringing my own brother with us on vacation? It felt like a sign of weakness to consider bringing a dedicated caregiver along to ease the burden.

In the end, I thought about the possible complications, particularly hotel arrangements and the ratios for pairing up to go on rides, and caved and asked to have a staff person who knows Leif join us on the trip. Which brings me to the first lesson from this experience.

I am so glad I fought off my own instinct to not ask for help.

Yes, apparently I need to keep learning this one over and over. I’ve swallowed the female family caregiver cool aid for too long, internalizing the idea that it is my job to be able to take care of everyone else with a smile on my face and without the need for support.

However Leif really does require 1:1 care. Frankly, I now realize that the trip would have been so much more exhausting and difficult with out support - not just for me, but for everyone. There would have been more stress and points of tension as I tried to balance everyone’s needs and preferences.

We spent most of the days and all our meals altogether as a group of seven. However, there were many times throughout each day when we had to split up for a bit based on ride preferences, needed breaks, etc. Having a staff person along allowed me to enjoy the trip with Leif and my whole family in a way I now realize would absolutely not have been possible.

I found myself feeling so thankful that we had made the choice to bring an additional able-bodied adult, and imagining how different I would have felt had we not. Some of that joy, magic and gratitude could have easily been edged out by exhaustion, stress and frustration.

As others have pointed out in this situation and previous ones, having more support allowed me to enjoy the trip as Leif’s sister, not just his carer. We could all be a little more present in each others’ company without the full care responsibilities for Leif and three children on me and my husband alone.

We all had so much fun experiencing the Rise of the Resistance and Cars rides for the first time. Leif got to load up on Star Wars shirts and swag, and even built his own light saber! We braved the line for the Spiderman ride twice, shared churros and enjoyed Goofy’s kitchen buffet while saying hi to Goofy and Minnie.

I also empathized with my younger self for all of the challenges I faced in my family growing up.

This trip brought back memories from my childhood, and the feelings that went along with them. There were funny and also challenging moments. Leif has some interesting habits, and people stare. He can get triggered and go from happy to overwhelmed quickly, and his OCD means that if routines are interrupted it causes distress. If not handled well, he can become aggressive. He yelled several times on both flights - either joyfully singing along to movies with his headphones on, or upset because his ears hurt - and a couple other times he became agitated when overwhelmed.

Having a very disabled brother and the two of us being mostly raised by my single mom who had her own mental health challenges was not a typical or easy childhood. I had to grow up and learn to be a carer too fast, and take the backseat when it came to getting attention and care from my mom.

Every one knew our family in my small town and while we had a decent community, I always felt people thought we were weird. We definitely stood out. Leif’s verbal skills are limited but he makes a lot of noises. My mom is intense and quirky and has a temper. People were often kind, but also often stared and kids giggled. I will forever have a fierce visceral reaction to the R word.

I have no shame or discomfort about any of it now, but what stood out on this trip is the compassion I felt for my younger self. I never felt like a normal kid, I was protective and defensive of my brother, but that doesn’t mean that it wasn’t hard or that the stares and insults didn’t sting. I didn’t get to just be a kid; I was expected to be helpful or I was trying to hide from unwanted attention.

I was reminded of the time we were on a flight with my mom as adolescents, and Leif stuck a gum wrapper so far into his ear that a doctor had to be called during the flight to help extract it. It’s a funny story now, but at the time it was just another all-too-common moment of stress and drama. At a point on our trip a few weeks ago, when he became angry and yelled after a long, overstimulating day, I was reminded of my teenage years when Leif became violent and hit my mother. This was the “normal” stuff of my childhood. A space was opened for me to fully acknowledge that my upbringing was tough and allowed me to do some healing around it.

The Most Magical Place on Earth has typical families’ needs dialed in to make things fairly easy, but it could do better when it comes to supporting people with a wide range of disabilities.

I looked into what accommodations were available and that we might need before we left. Physical accessibility and ADA accommodations are available at Disney, including ride transfer devices for wheelchairs. Leif did an incredible job walking throughout the two days, even though he lives with back pain and scoliosis. Leif moves slowly, but even after taking a fall after missing a step, he answered with a hard no on being pushed in a wheelchair.

I also looked into the option for “invisible” disabilities. It turns out the DAS program has been quite the subject of controversy in recent years. Prior to changes made in 2024, disabled guests who needed to skip the line could do so. Apparently there was rampant abuse of this program, including paid “guides” that helped people skip lines using a fake DAS qualification.

Rather than dealing directly with the abuse, Disney significantly narrowed the criteria for qualification to those with a verified developmental disability, such as autism or similar, for whom waiting in line would negatively impact their own and other guests’ experience. In addition to the narrowed scope, there are several hoops to jump through to take advantage of the program. You must first have a virtual meeting with Disney cast member to explain and prove your disability. Then, for each ride you must actually go and join the queue, flag down a cast member, and get a return time equivalent to the length of the line, and you can only hold one at a time. For many, including me, this sounded like more hassle than it is worth.

And sure enough, a quick google search unearthed story upon story of being denied qualification (even with diagnoses), and even humiliating experiences of being questioned by cast members for each and every ride, and the difficulty of having to go all the way to a ride and then come back two hours later. Many caregivers found it to be unhelpful at best. Disney’s response is to push people to purchase lightening lane passes, which is what we did, but disability advocates rightly point out that accessibility should not cost a premium.

Again I was reminded on this trip that as caregivers, we too need all the support available to us. Whether that is another set of hands or truly inclusive accommodations in public spaces. For me, having the help of someone to accompany Leif and being able to purchase lightening lane passes made all the difference in our experience. And we are privileged to have access to those things. Others should be able to have the same opportunities.

Overall, it was a wonderful family trip. It was heartwarming and healing for me. I loved seeing my kids continue to figure out how to interact with their uncle Leif, which isn’t particularly easy. I saw them get excited to do the things that they knew he would enjoy, and it warmed my heart when they said they missed him when we got home. Most of all, I am proud to see them learning to be accepting, compassionate and loving humans at a time of such division.

Do you have an experience with Disability accommodations at Disney or other public spaces? What are other accommodations that are helpful to you but not always available? I’d love to hear your experiences and ideas.

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I never really understood why anyone would want flowers when they are grieving - until my dad died. I always imagined that those bouquets would just serve as depressing reminders of a pain so great that no object of beauty could fix.

I received many bouquets in the week or so after I returned home from Mexico, where I unexpectedly said a final goodbye to my dear father. Surprisingly, those flowers ended up really comforting me, and I appreciated their presence and beauty more than I could have imagined.

I’ve since realized that it wasn’t the flowers themselves. It was the community of people who love me that they represented, a reminder that others were there for me, to help hold my feelings. They were not so much a reminder (I was not exactly about to forget, anyway) as an important acknowledgement of my profound loss.

Maybe the symbolism seems obvious, but it wasn’t to me until that moment of grief. The flowers themselves represented the care of other humans, and the interconnectedness and dependence we share as living things in this world.

Their presence along with cards and text messages and care packages reminded me that even during the darkest times, I have many people caring for me and available to lean on. And it felt particularly important to be reminded of that in the post COVID world, as we had become so easily accustomed to less human contact.

Community and emotional support is incredibly important to humans, particularly in times of crisis. Yet it seemingly has become harder and harder to come by and maintain in a digitized world, where a simple unplanned phone call or house visit - once normal for us Xennials - has somehow become perceived as almost intrusive.

Many of us in the US are experiencing grief for the violence in our communities, mostly carried out by our own government against the people it is meant to represent. The fascists in charge are doing everything in their power to tear communities apart and pit people against each other.

But you know what? The disruption and pain is driving some of the greatest community building and protection efforts we’ve seen in this country in a long time. People in Minneapolis and other communities - whether directly targeted or acting in solidarity - are gathering in the streets again, looking out for their neighbors, and opening up their small businesses as safe spaces for those resisting ICE to make signs, warm up and refuel.

Even beyond the direct community efforts responding to imminent violence, there is a growing movement to build and deepen community ties that have atrophied in recent years. From deep casual hosting and the many recent potluck enthusiasts to Whatsapp groups to organize walking kids to school, and the proliferation of tin can phones for kids. I have loved reading about the children in several of our local school districts in Seattle that have staged walk outs to protest ICE over the past couple of weeks. These are our future leaders, getting off of the devices that mostly consume their time, and into the streets to look out for each other, together.

At first the idea of hosting your neighbors for coffee or a potluck feels inadequate and possibly even minimizing given the moment we are in, particularly for those in places under siege. But suggesting simple community building efforts is by no means meant to minimize the pain - quite the opposite. Building community is not only important to our own well being, but deeply important for organizing in times of resistance. Garrett Bucks of the White Pages wrote an excellent piece explaining seven reasons why this is true. I recommend reading the whole article, but essentially the idea is that you can’t build an effective movement with people you don’t know and if you don’t care about your neighbors; and consequently, fascism thrives on loneliness, division and fear. He writes:

Rage gets us one step down the road. Heartbreak another. But we’ll burn out if that’s all that sustains us. If we want to keep moving forward, we have to feed each other. With our love. With our laughter. With shoulders to cry on. With stories that were once our own but have long since become shared lore. With casserole dishes filled to the brim. With care for all of our children, all of our elders, all of the loneliest friends in our midst. With memories, now distant, of the days when we didn’t know each other, and how much worse it felt. With relationships, once frayed, now repaired. With mistakes made, and grace both given and received. With a promise, first whispered tentatively, then shouted with full throat. The best is yet to come. There’s a beautiful destination ahead of us. We just can't get there alone.

The ability to truly care for others begins with connection.

The creative, funny and at times even joyful displays of solidarity and protest that emerge from these connections are what keep my faith in humanity from crumbling. Joy and togetherness are critical to resistance in these dark times. They are the bouquets of flowers reminding us of all the care that remains amidst the grief.

Tell me what you’re doing to build community and care to get through these dark times.

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For the first time, all three of my kids stayed up with us until midnight on NYE and we shared a sweet, happy family moment shouting HNY, with a big family hug. Just what we needed amidst all of the chaos and uncertainty of the times we are in.

I hope you are feeling somewhat rested and recharged for the year ahead. Alas, as many will point out, that’s not always the fate of the caregiver who goes back to work in January. Not only do care responsibilities not take holiday vacation, but many of us are very busy creating and managing the holiday magic and doing the extra kin keeping that the season demands.

I can say, however, that while the news and the state of this country keep my nervous system on high alert, I did come back rested. I slept in pretty much every day over the holidays (except Christmas because, Santa), and I think I had the best success yet in holding boundaries where I needed them. I worked out a plan to spend time with my mom and brother that did not feel overly stressful, protected our own family traditions, and kept hosting easy by ordering pizza for a NYE get-together with friends. Those who know me will understand that these are wins!

It’s been great to see a growing stream of mainstream media that centers caregiving. And we could all use something besides the news to get lost in. So I’m starting the year by sharing a round of up some care-related reading and entertainment that I’ve been curating for you, followed by some gems I dug up from my family archives.

Articles

There was an excellent long form piece in Vox recently about the Care Blocks program in Bogota, Colombia. I’ve been following this project since it began, and think it holds some great ideas and evidence-potential about the positive impact of supporting caregiver-specific needs and infrastructure.

Who Cares? What to do about our Careless Care System, in Philanthropy Women looks at how philanthropy can play a role in supporting care infrastructure, which it has historically focused on empowerment as opposed to care labor infrastructure.

I recently published a story in Business Insider about being blindsided by my mother’s quick decline and dementia diagnosis, and the importance of planning. Let me know what you think!

Books

Fiction

Sandwich by Catherine Newman. A contemporary story about a perimenopausal woman who vacations with her grown children and her aging parents on Cape Cod. I enjoyed this one last year and look forward to reading her follow up that continues the same story line, Wreck.

My Grandma Asked Me To Tell You She’s Sorry by Fredrik Backman (he wrote A Man Called Ove). This book is about an eight year old girl whose best friend (her grandmother) dies, while she is also navigating divorced parents and soon, a new half sibling. She goes on a wild hunt arranged by her late grandmother, learning about her past and getting to better know the people in her present. Backman always manages to confront difficult topics with a certain lightheartedness and humor.

Nonfiction

I have been telling everyone lately to read Being Mortal by Atul Gawande. His understanding and thoughtfulness about aging that comes from his experience as a medical doctor, combined with approachable writing and compelling stories, make this a great read. But it’s also such an important one: most of us do not spend the time we should thinking about what we really want as we age, how we want to be cared for, and what is really driving the medical decisions we make toward the end.

Series and Film

Ok admittedly I don’t really watch many shows these days. I like getting into a good series, I just really don’t feel like I have time, and when I do have time, I’d rather read. The exception is on airplanes - then I will binge-watch entire seasons at a time. But there are a few series/films that I’m very intrigued by because they explicitly focus on the caregiver experience and invisible labor. Here is what I’ll be downloading before my next flights. Or maybe sooner if I can find a moment…

All Her Fault (Peacock/Netflix). This one has been on my radar and gotten a lot of attention - at least in the forums I’m a part of. As you can see from even the trailers, it really drives home the themes of mom guilt and the mental load.

Caregiving (PBS). A documentary produced by Bradley Cooper, who discusses his own challenges caring for his father with cancer. It follows several families navigating caregiving situations and roles, and brings in historical and policy analysis to examine today’s reality. Read more about it here.

His Three Daughters. A 2024 film about three estranged sisters who come together to care for their dying father.

From the family archives

In December I shared a New Year’s Day editorial written by my paternal grandfather for the newspaper he edited. I have been going through boxes and boxes of of photos and other treasures that I ended up with from both of my parents. There is WWI memorabilia, early 1900s tintype photos of people that I assume are relatives, photos from my dad’s childhood, newspaper clippings from my dad’s 20s when was student body president at the University of Washington, letters he wrote home from Iran in the 1960s and of course photos from my childhood, like the one above.

I really love looking through it all, I find it fascinating and am comforted by the feeling of connection to previous generations. I feel I’m continuing to get to know my dad after he is gone and getting a glimpse into the life of relatives I never met.

Let me know if you also find this interesting and if you would like to see more from the family archives. Should I do one newsletter a month on family history and artifacts I find?

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In the treasure-trove of sepia and black-and-white photos from my dad’s college years in the early 1960s, here are two stand-outs. On the left, my dad’s fraternity brothers holding up a sign supporting his bid for Student Body President of the University of Washington, which he went on to win. On the right, a signed photo of my dad (on the left) with WA Democratic state Senator Henry M. Jackson. I believe this was on a trip to D.C. with the American Boys Legion.

I also found an original 46 year-old newspaper from July 23, 1980 - the day Mount Saint Helens exploded in Washington state, the most destructive volcanic eruption in US history. The ash fell throughout the whole state and into 10 others, as well as several Canadian provinces. My parents described ash falling like snow almost 300 miles away. The Seattle Post-Intelligencer is apparently the oldest west-coast newspaper, and was the first to go fully digital in 2009.

That’s all for now, friends. Take special care of yourselves and others in these trying times.

xo Anna

The holidays can be a tough time for caregivers. Beautiful and magical, but tough. We are pulled in many directions, largely responsible for the “magic making” to ensure the traditions are checked off and the warm fuzzies abound. The last school week of December we were tracking five different spirit days, school dances, cookies and gifts for the teachers. Emotionally we are holding diverging feelings and wishes for how the festivities, gift giving and time together will unfold, sometimes with family members that we aren’t particularly close with or who have very different expectations. Kids are excited, jacked up on sugar, and cycling through intervals of elation and meltdown.

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Those caring for disabled and elder folks must also navigate many of these same duties and expectations, but woven in with existing medical care that doesn’t take a break for the holidays. Sometimes rather than excitement, there is sadness and longing for how things were before or how they could have been. Existing mental health challenges that may have been dormant tend to awaken and fight for attention. I’m sending love out to all of you who are struggling with any and all of the above.

I really do love the holidays but like many moms and caregivers, I can also find it stressful. I’ve tried to focus on the things that really make us happy as a family, but to be ok with imperfection and letting things go. Sometimes I succeed, often I don’t.

This is also a moment of looking back at the year that is coming to an end, and forward to a new one. I can’t say I know anyone who is sad to see 2025 in the rear view. Our government is broken and waging a war on people of color, women and democracy itself. Life goes on and those of us privileged enough to do so go through our days like things are normal, except none of this is normal; we are smiling while our nervous systems are on high alert. It is deeply disturbing and exhausting.

But when everything is broken, sometimes that’s the nudge you need to do something bold and different. 2026 will mark a new chapter for me and my family in many ways, which I’ll look forward to sharing with you along the way.

My More Of List for 2026

In the past couple years, I have shared my preferred way of thinking about New Years resolutions. Rather than focusing on fixing vices or buying into optimization culture, I like to think about what I simply want to make room for more of in my life. The things that serve me well, that make me happy and fulfilled and more aligned with the life I want to live. Here is my More Of list for 2026:

1. More time on creative hobbies. One of mine has always been baking. But recently, my middle kid took up an interest in sewing, and I busted out my great aunt’s 1947 Singer sewing machine and re-learned, then taught my son, how to use it. He successfully sewed a shirt and pants, and got me excited to start sewing projects of my own. He also wants to start watercolor painting and I think I might take that up with him, too. It’s so fun and satisfying, both the projects themselves and the connection and creative time with my kid.

2. More presence, spontaneity and adventure. This one sounds cliche but there’s probably a reason for that - these are the moments we end up cherishing. Allowing yourself time in the moment each day, rather than constantly obsessing over productivity and what’s next is just… a better quality of life. Yet many of us struggle to allow it. Maybe it is the fact that I have a middle schooler and it has hit me that his years as a kid in our home are numbered, but I have been stopping to intentionally notice and be truly present in small moments more. It sparks gratitude and happiness that feels like the best drug. 2026 will definitely include more intentional presence and healthy risk-taking - i.e. more moments that feel like truly LIVING.

3. More nurturing the relationships and communities that are a positive force in my life: Relationships are effort. Participating in community somehow feels so harder than ever, and simultaneously that much more important. I haven’t always been great at giving them the attention they deserve. I want to truly nurture the relationships that feed my soul and lift me up, and let go of fighting too hard for the ones that do not.

I would love to hear you share any of your “more ofs” for 2026!

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I am loving looking through the treasure trove of letters and historical documents that my dad collected and saved. They include letters he wrote to his mother while living in Iran and traveling through Israel and India. Old photos, article clippings, and other artifacts from when he was young, and of his parents and grandparents.

One of these artifacts was an editorial that my paternal grandfather - who died before I was born - wrote from his position as Editor of the small town Enumclaw Courier-Herald on New Years, 1960. Sixty-six years later, we may be further from that last goal than ever, but it remains one worth fighting for.

Wishing each of you peace, love, and the strength to continue caring for yourself and others this holiday season. I am grateful for this space and this community, which is one I look forward to continuing to nurture in 2026.

xo Anna

It’s been about a year since I published an article about Caregiver Microfeminism, and I thought it seemed like a great time to revisit the topic.

You know, as we are witnessing our country ravaged by toxic masculinity, governed by entitled and mediocre white men, and waking up to articles in the New York Times titled “Did Women Ruin the Workplace? (I beg your finest pardon?)

Yes, so entrenched and accepted is misogyny in 2025 America that it is apparently still normal to accuse women of being the ones who “started it”.

It’s giving ‘…but what was she wearing?’

It’s easy to feel powerless in generating progress for gender equity on the national and policy level when misogyny is so pervasive. When the rollback of reproductive rights is killing women, when women-dominated fields like nursing and social work are being reclassified as “non-professional,” and according to conservatives the answer to all our problems is to shove women back into the home to perform free labor, barefoot and pregnant - or maybe now it’s with heels and eyelash extensions? (Sorry, couldn’t help it).

The comfort I can find is in knowing that we have the opportunity to influence the attitudes and ethics of those around us - those we care for. Perhaps most importantly, the next generations. And in a world where boys are getting fed Andrew Tate as soon as they get a phone and Tesla’s AI bot is asking children for nudes - it’s an opportunity that we must embrace.

So yes, we still need feminism, and I’m more motivated than ever to make sure I raise equity-minded adults. My protest to all of this macro-misogyny is to up the resistance game with my kids and those around me in daily acts of microfeminism.

It’s not uncomplicated though. One thing on my mind lately is how we model and approach household labor with our kids.

My mind cycles through the following: “make sure you are teaching the kids to contribute to the household and that they are taking on increasing age-appropriate responsibility for all types of chores (not just the gender-typical things). Make sure they know that everyone has to learn how to do things that aren’t necessarily fun so they don’t turn into partners who weaponize incompetence. But also, let them be kids.”

Over the summer, my step-dad and his two sons - who he raised as a single dad - were reminiscing about how the three of them used to take turns making dinner growing up. It was one of the boys’ expected contributions as they got older. They laughed about their dad being served some pretty terrible dinners. But it was also clearly a fun memory - and now they know how to cook!

But also, embarrassingly, I realized that I can’t imagine my oldest kid cooking dinner anytime soon. Let’s face it, it’s more difficult and time consuming to teach kids how to do things, knowing the result will also be… of questionable quality. It’s incredibly important! But let’s acknowledge that it is additional care work to squeeze into the day.

The initial mental load involves thinking through who will do which chores and on what schedule, and whether this will be linked to any allowance or consequences (because they will ask), and how it will be tracked and enforced. You spend time teaching and enforcing the things that you could have done yourself in a fraction the time, in an era where parenting is already more intensive than ever.

Honestly, we haven’t completely figured out the chores piece, but we are working on it with intention. The oldest does his own laundry, the younger ones help fold theirs. They all are expected to pick up after themselves after meals and in general. And then we often (but inconsistently) ask them to do other things: set the table, unload the dishwasher, bring in/out the trash cans, water the plants, etc. Lately we have been cat-sitting for our neighbors, and I have made clear that they need to show me that they can take responsibility for pet care if they want to get one in the future (they do!).

Regular chores are not linked to money because none of us get paid for them, but they still need to get done, and we are all responsible for contributing as members of the household. Everyone can learn to do every chore, there’s no boy or girl chores. I’ve decided that having these guiding principles in our approach to chores is not only what is more realistic for our family, but maybe more important than a chart or schedule.

Other acts of microfeminist rebellion to add to my list from a year ago:

• I have made sure to tell my boys when they are in upper elementary school about girls getting their periods soon. I explain what is going down, why they better be kind friends, that it’s totally normal, and why its very uncool to be a jerk about it. Apparently I mentioned this to our pediatrician at some point, and she told me on our last visit that it stuck with her and she has now incorporated that into her well check visits with elementary age boys.

• We talk to our kids about things that are happening politically that we think are harmful and why (in age-appropriate ways).

• When we hear gender stereotypes from others, in books, TV, etc I try to make a point to question and talk about it. The last time we visited my elderly mom with dementia, she made a couple of very gender-normative comments about either the appearance or the behavior of my boys. For example, she made a comment about one of my sons not wanting to give her a warm, enthusiastic hug because “he is a guy.” He looked at me confused and said, “what? That’s not true!” I reassured him that he is right, and that wanting to show affection has nothing to do with being a boy or girl. The fact that my son found his grandma’s comment so ridiculous reassures me that we’re still on the right track.

Moving toward equity is uphill battle in our country right now, but it’s one I’ll keep fighting. How do you all incorporate microfeminism/inclusivity into your caregiving? I’d love to hear about it in the comments below!

📚 Reads

Unlike the aforementioned New York Times opinion article, this one on the caregiving crisis is an excellent read.

In Time Magazine, The Real Way Schools are Failing Boys. Spoiler alert: it’s not women or feminism.

Listen to Daragh Fleming read his poem: If I ever have boys they’ll be dangerous men

Thanks for reading, and sending out gratitude for this community! ❤️

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The 24-days-and-counting US government shutdown is wreaking plenty of havoc, but one of the many consequences that hasn’t been in the news as much (there is just too much competing havoc to report) is the expiration of Medicare telemedicine coverage. This is a provision that has been in place since Covid times, when it was part of the Public Health Emergency (PHE) stopgap legislation that expanded access to care during the pandemic. It allowed for those on Medicare to access care virtually and in some cases, in their home.

These waivers were never made permanent, but were extended several times as they had become built in to the care continuum for many patients and providers, particularly the elderly and those with disabilities. It turned out that telehealth worked well and was efficient on both sides under many circumstances, with half of Medicare enrollees opting to use telehealth services. However, these allowances faced another funding cliff on September 30, 2025, and this time they expired without being renewed— then the government shut down.

There are plenty of other government programs - and more importantly, people who benefit from them - that are suffering with shutdown. Federal workers going without pay, hungry families going without SNAP benefits, the list goes on. I highlight this one today because it disproportionately impacts caregivers, but also risks completely disappearing since the cliff came and went the day the shutdown began - a shutdown that is Democrats’ last ditch attempt to salvage our health care safety net overall. The telehealth provision could be renewed when the government is up and running again - but will it, under a government that just stripped nearly $1 Trillion in Medicaid?

Most of us are now dependent upon the convenience and efficiency of telemedicine options when possible. Those of us with private health insurance will likely continue to benefit from them. But those on Medicare already disproportionately struggle to get to the doctor due to physical limitations or lack of transportation. For many seniors and disabled folks, telehealth options make the difference between getting care or not, or waiting until an emergency and ending up in the ER instead.

In short, telemedicine increases care compliance for those who need it most. Care compliance improves health outcomes. And better compliance and outcomes further reduce costs. A similar situation plays out for medicaid and medicare cuts overall: lower insurance coverage in the population as a whole means more expensive premiums for those who are covered (since there are less paying into the pool). Lower insurance coverage also means lower uptake of preventative health, which means a sicker population and more ER use (and higher costs) down the road.

It’s not unlike return to office mandates - they create negative impacts on productivity and employee satisfaction, and clearly disproportionately harmful for women, caregivers, and people with disabilities. We are already seeing that one play out in real time, as women’s participation in the labor force has taken a measurable downturn in 2025 with RTO mandates.

Speaking of women exiting the workforce, new research suggests that the Tradwife trend isn’t about a fond remembrance of women’s relegation to the home, but a response to the exhaustion of chasing an unattainable duality. Much of this stems from women’s role as default caregivers in an environment of increasing childcare costs and expectations, while still being expected to work like those other responsibilities don’t exist. Josie Cox writes in the Persistent:

“While the tradwife movement might look like a nostalgic return to the 1950s, it actually indicates something more sinister: a cry for help and a sign of women’s collective exhaustion….For many, it represents an escape from relentless work demands, high childcare costs, and a culture that still expects employees to be ‘ideal workers’ without family responsibilities”

Yep, that tracks. Women still can’t “have it all.” At least not without equity and support, and a healthy dose of redefining what “having it all” means in the first place.

Did you see the recent Caregiver’s Survival Guide from NPR? They collected advice from readers who are caregivers, organized into six different categories.

Lastly, and on a positive note: Iceland is celebrating 50 years since the “Day Iceland Stood Still” - the first Women’s Strike in 1975, in which 90% of women walked out of their jobs and homes to draw attention to unequal pay and rights. It has been credited for the country’s progress in closing the gender gap, where today it sits at the top of gender equity rankings worldwide. Change is inevitable; and positive change is possible - if we work for it.

It’s rough out there, but don’t give up. Do see if your elderly neighbor needs a ride to the doctor. And keep protesting!

Psssst… I just started a lil’ Gen Xandwich account on Instagram if you want to follow along there.

As always, thanks for being here.

How do you care for someone who has pushed everyone away - including those they expect to care for them? I’ve been thinking a lot about this, because it is the situation I am in with my mother. We have come to a new phase of the care journey, in which I am not physically needed to support her care in the same capacity anymore. And because of our history and relationship, I see her much less.

Seeing her frequently was inevitable when she first became physically sick and was diagnosed with mild cognitive decline, because I constantly needed to do things for her that no one else would or could: take her to outside medical appointments, sort out financial messes or rescue her in some capacity from her own actions. There was always something urgent and a long to-do list.

My mother is now settled in a nursing home and not very mobile. We have gotten rid of her car and many of her belongings - which was a major headache and struggle. Because she is closely monitored, she isn’t falling and letting her apartment turn into a hazardous environment or creating drama or safety concerns anymore - as she was in Assisted Living. I can’t say I miss getting phone calls while traveling abroad that, for example, my mother has become verbally aggressive with staff, or decided to go out for a drive in severe icy weather (when she shouldn’t be driving at all).

You might think this behavior is all a product of the dementia, but in her case, it is not. Her cognitive impairment is still moderate, but the mental illness has been there a long time. It is something I had come to terms with before the caregiving began, but not early enough.

I feel sad for my mom and how things have turned out for her; for her solitude. And I can’t completely escape the feelings of guilt about not visiting more. But I have also spent years in therapy feeling sad about my experience with an emotionally immature mother. The constant walking on eggshells. Recalling the mental gymnastics I went through for most of my life to normalize erratic behavior, lies and rage. I spent too many years believing her narrative that I was just not a good enough daughter, while missing the emotional support I desperately needed from her.

When she became sick several years ago and the veil was lifted, the realities of her relationships with her few remaining friends were sad but validating. Her best friend of many years had recently gone no contact, after informing her in a letter that she could not endure my mother’s treatment any longer. Another friend commented that she always thought it was so strange that my mother never showed any interest in getting to know my husband. There was a very singular focus and pressure on me to be what she needed, and it was never enough or reciprocated.

My coping mechanism and self-protection over the last several years has been acceptance of the reality of who she is, and constructing an emotional barricade. It was the healthiest thing I could do without going no contact. Yet I still endured feelings of fear and dread in the pit of my stomach when I showed up to do my caregiver duties time and time again, because who knows what kind of mood she would be in and what I would be faced with. But if I didn’t organize her life and care, who else would?

So now, with her settled and with care on autopilot, and because of the discomfort it brings me to be around her, I don’t see her nearly as much. It would be physically simple to visit her more, but emotionally, it is exhausting. I handle her Medicaid paperwork and her finances. I make sure she gets items that she needs and that health issues are addressed. But I don’t make many social calls.

I frequently look at my children, especially my daughter who still wants to snuggle and tells me she loves me 100x a day, and think to myself “do not fuck this up!” Because I desperately want to have the type of mother-daughter relationship with her that I did not have with mine. I want my children to feel safe, seen for who they are (not judged for who I want them to be for my benefit), and loved and accepted unconditionally. I hope they will continue to confide in me, and that we will remain close when they are adults. But I also do not take that wish for granted.

I am sharing because despite the emotional detachment, I have been feeling conflicted and guilty about not seeing my mother more often. I imagine that others must judge me for it. But I also know it is the healthiest way for me to manage. Caregivers already experience high rates of mental illness and chronic stress, even without being in emotionally unhealthy relationships with those they care for.

I also realize that many of you caregivers reading this likely also experience feelings of guilt: that you don’t do everything you possibly could, or all that you are made to feel you should (even though you do so much). And maybe that is because you are taking care of yourself in the form of boundaries with those you care for. It’s ok. Care for others is incredibly important - vital - but it should not come at the expense of self-preservation. You are not alone.

Check out ’s tips about navigating the emotional complexity of caregiving, particularly with a parent you may have a difficult past with.

Feel free to share your thoughts or experiences with estranged caregiving in the comments, or forward this to someone you think can relate.

The calm was great while it lasted! Now we are back in it, getting through the first illnesses of the school year, figuring out a complex carpool and pickup/drop off schedule that requires shared spreadsheets to manage, organizing birthday parties, and dealing with emergency water damage in our home. But also some fun planning and projects that I hope to share more about soon.

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For now I’m going to reminisce about our incredible summer. I’m sharing just a few of the many takeaways from a big adventure with children and our time in Paris and Spain. It was a new kind of trip for our family; it was longer, but also different, because our kids are getting older. It’s amazing what a difference it makes to travel without strollers, diapers and heavy carseats, and with kids who can carry their own backpacks. Of course there are still accommodations, different priorities and considerations when kids are involved (and there’s still whining), but we felt freer to enjoy the time together and it was rewarding to watch them experience and take in new things every day - things that they will hopefully remember.

Murphy’s Law for Traveling with Kids: Someone Will Get Sick

It was the kids’ longest flight to-date, nine hours direct Seattle to Paris overnight. The flight was uneventful, though most of us struggled to get much sleep. When we landed though, while most of us were excited - my oldest son Oscar was miserable. His throat hurt, he was panicky about not having slept, and was barely holding back tears.

We made it to our friends’ place, but upon waking from a nap, he was speaking in gibberish and having mild panic attacks. It was unlike anything we had seen before, but realizing that he was having some kind of hallucinations was quite scary.

After being awake for a bit we managed to calm him down and he seemed to snap out of it. We were all a bit loopy from travel - maybe it was the combination of sleep deprivation/ jet lag, some travel anxiety and a cold? We managed to make it out for a picnic in the park down the street with good friends who we were ecstatic to see. Oscar rested on a blanket in the grass and seemed to be a bit better.

That night, however, he woke up multiple times again panicking, dripping with sweat and crying. His fever got up to 104. We were all exhausted but not sleeping, Alex and I getting more and more concerned. The next day, my daughter woke up vomiting. Needless to say, we did not make it to the Louvre for our overly-ambitious 11am entry time.

We took Oscar to a doctor, who confirmed that physically he was “fine” just had a virus. It was both reassuring, and slightly frustrating. Luckily the hallucinations soon subsided along with the fever, and he recovered enough to do a few mellow activities in Paris, with lots of rests and leisurely meals and terrace drink breaks in between. We saw the Eiffel tower, took a boat cruise on the Seine, and made it to Montmartre. By the time we flew to Madrid, he was just about back to normal, and our parental guards were able to come back down a bit.

It was a bumpy start. What did I learn?

• I’m glad we bought travel insurance. It was easy to get the doctor’s visit covered, but even more importantly, it gave me peace of mind.

• You need to book some sights in advance, but things don’t always go as planned - especially with kids - and you may have to cut your losses.

• While everything we needed was available in Paris, I’m glad we had a thermometer and some basic first aid supplies with us. Sickness doesn’t care if it’s 10 PM on Sunday night when the pharmacies are all closed.

• I’ve said it once, and I’ll say it again: with dependents, it’s not a vacation, it’s a trip!

Watching growth happen before our eyes

I have many memories from my early travels of certain mind-blowing moments that made a lasting impact. This time, the most impactful moments were watching my kids have new experiences that expanded their mind, delighted, or challenged them in some way. And there were many.

Some core family memories that were formed on this trip:

• My budding eight-year-old artist, sketching Dali and Picasso paintings at the Reina Sofia in Madrid.

• Taking our children to a Flamenco show in a cave in Granada, watching my daughter practice her own flamenco dancing in a new pink polka-dotted dress.

• My oldest choosing to order fried anchovies off of the tapas menu.

• Sitting around a patio table in the sun with Aperol spritz (for the adults) and Fanta (for the kids) and more tapas, while sharing and comparing our unique hidden talents/genetic abilities. 3/5 of us can wiggle our ears!

• Splashing in the waves of the Mediterranean in Valencia, my kids smiling ear-to-ear and shouting “you haven’t lived until you’ve done this!”

• A pool party for our middle kid’s 8th birthday, with our French-German friends in a house outside of Sitges, Spain. All ten of us played Marco Polo, did coordinated cannonballs and jumping contests to a soundtrack of our favorite songs. Dreamy.

• Watching our kids pick up French and Spanish words here and there, their curiosity and interest in the language increasing every day. Seeing how easily they became friends with our friends’ kids despite cultural and language differences.

How a community-oriented culture feels

One thing I anticipated loving, and did absolutely love about being in European cities with kids, is the prevalence of third places that are made for and welcoming of everyone. We ate many meals at sidewalk cafe tables, while our kids ran around in the adjacent plaza, or played on the playground within eyesight. It allowed all of us to enjoy the slow, long meal / social time even more. We weren’t just checking dinner off the list, we were spending quality time together with each other, and in community with others.

We took public transportation everywhere, and it was clean, easy, and affordable - a stark contrast to our public transport options and car-oriented culture at home.

People respect and care for their shared goods and spaces. It reflects a more community-oriented vs. individualist mindset. We saw this in visits to public pools, parks, and establishments of all kinds.

We also felt incredibly safe. Many nights we were walking home after dinner at 11pm or midnight (yes our kids adapted to Spanish time), and the streets were always still alive with other families and groups wrapping up dinner or out for a stroll. Despite traveling through several cities and exploring unknown neighborhoods, we really were not in any situations that made us concerned for our safety. Sadly I can’t say that about my own neighborhood in Seattle anymore.

I truly believe that when a society and government reinforces the idea of caring for others, of the value of social safety nets, and recognizes that we are not all in this living-on-planet-earth-thing alone, the positive benefits go beyond the policy and safety nets themselves. They reinforce behaviors that value community care for each other, and the results are visible and widespread.

The State of Care in the US

I’m devastated about the big bill and medicaid cuts, and sincerely worried about both my mother and brother’s care. Our local Children’s hospital just announced major staffing reductions due to Medicaid cuts and anticipated funding shortfalls. Are you or your family affected? I would love to hear your story, and predictions about how changes might unfold.

Have you seen the Caregiving in the US report, published by AARP and National Alliance for Caregiving that came out in July? It’s a detailed look at who family caregivers are in the US, how we spend our time, and reinforces the need for greater support across the board.

Hello to my lovely paid subscribers,

I wanted to take a moment to message you, this small group of committed readers, to say Thank You! I deeply appreciate you being here and supporting my writing.

I also want to acknowledge that I have been MIA here for the past several weeks, and to thank you for your understanding as I took a much needed break. I too…

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I’m glad we waited over a year to spread my father’s ashes. For one, we almost spread them in the wrong place. Oops. I don’t think he would have been upset if we had set him free at the Columbia River Gorge, where he used to windsurf, which is the location we all had in mind and were collectively sure was what he wanted. At one point, it was what he wanted. But we had all temporarily forgotten that, several years before, much to everyone’s surprise, my dad had changed his mind - and his will. He wanted to be spread in the garden of their home on Whidbey Island.

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It almost felt too raw and painful to do anything with his ashes immediately after he died last year, and even after the memorial. At one point there was a suggestion to split up his ashes among family, to which I had a knee-jerk horrified reaction. I now realize this is not uncommon to do, but at that time, everything carried too much weight for any plan to make sense. It was also the last that was left of my dear dad, so perhaps I just didn’t feel ready.

I think we were all a bit thrown off when we realized our almost-mistake. Both the Colombia River Gorge and the Whidbey Farm were incredibly important and meaningful in my dad’s life. I guess it made more sense to him to stay and rest in the place where he had sat out in the sun, admiring the garden, so many days at the end of his life.

We waited until all of the children and grandkids were able to be together at the farm a couple weeks ago to say our final goodbye. We all took turns sprinkling his ashes in the gardens of the farm, and walked down to the beach to set some free in the Salish Sea. It was surprising to us just how much ash there was, and how it looked like sand - bone fragments in place of the shells. I set aside a small amount for a mini urn to keep.

The visit included a tough family conversation with no clear resolutions. Blended family relationships can be their own level of challenging, and I let much pent up emotion spill out, which wasn’t easy for everyone to hear. The communication was ultimately a good thing that I hope will bring us closer, but it was exhausting. I spent about a week recovering from a vulnerability hangover.

This emotional visit came right after the week where two of my kids “graduated” (preschool and fifth grade) and all three will be going to new schools in the fall. It feels like so many big milestones are happening, but so quickly and with so much to do attached to them, that I barely have time to let it all soak in.

But then when I have quiet moments, usually right after the most chaotic ones, I am brought almost to tears with anticipatory grief about my kids growing up. Like, how is my oldest kid 2/3 of the way to 18? Can anyone else relate? I can already feel myself missing them when the are grown. Is it me, or my friend peri(menopause)? When did time start moving so much faster?

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What will happen if this Big, Ugly Bill Passes?

Never has this quote felt more true that what we are witnessing in America right now.

My mother has dementia and resides in a nursing home. My 49-year old brother has Down Syndrome and needs 24 hour support. Both depend on Medicaid for their health and wellbeing.

The senate has voted to strip millions of people - like my mom and brother - of the care they depend on to survive.

To be clear, Republican senators voted to:

• Take Medicare and Medicaid benefits from 17 Million Americans

• Pull $1.1 Trillion from an already bare-bones Healthcare system

• Close 1 in 4 nursing homes in the US

• Take food, shelter and healthcare away from disabled people

Medicare and Medicaid have held widespread bipartisan support for decades. Without this safety net - where will people go? How will the millions of people who depend on these services survive?

And for what? For more tax breaks for the richest of the rich. Beefing up ICE to continue terrorizing our neighbors. All of which will be put on the credit card for future generations to deal with - adding $3.3 Trillion to the deficit.

If this Big Ugly Bill passes, make no mistake: it will impact every single family in America.

But it still has to go to the House. If there's a time to call your Representatives, it is now.

Lastly, I was honored to be quoted in an article by Brigid Schulte, Director of the Better Life Lab at New America, out in U.S. News and World Reports last week. She argues that the pronatalists should consider flexible work and family-friendly policies, not motherhood medals - and you will not be surprised that I agree. I shared how remote work enabled me to grow my family long before such flexibility was the norm.

I hope you are all hanging in there and finding moments of summer joy and small victories, despite the chaos and uncertainty in this country and in the world.

With care,

Anna

Happy almost Father’s Day to the Dads out there!

I know that the majority of Gen Xandwich readers are women, but there are many dads in this community as well. In fact, many of you I know are involved dads that talk about your emotions and struggles, and take on day-to-day care and mental load of your kids’ lives. Some of you are also trying to balance care for parents with dementia. I see you and I appreciate you, and I love that several of you have chosen to reach out and share your stories with me.

I write a lot about the gender inequities in care, which most visibly and materially play out for mothers. But dads and male caregivers face challenges too. Many of these are due to the lack of structural and community support that virtually all caregivers face. Others are specific to men, and are often byproducts of the same gender inequity that can hold female caregivers back.

The idea that dads can’t or won’t do “mom” things is an example that is constantly reinforced in our every day lives, and this makes going against these norms even more challenging. Almost every parent will tell you that many daycares, schools and camps always call mom first, and party and activity invites are sent to moms. In families where dad is the default or primary parent, or whose task it is to manage school schedules, calling mom first even when instructed otherwise is not uncommon, but can make life harder for everyone the family.1

Moms are held to higher standards by society - and will bear the consequences of those standards not being met. There are countless anecdotes about the different responses that dads and moms receive at the playground. Dad wearing a baby is “such an amazing dad!” while mom wearing a baby is more likely to be picked apart for looking at her phone or because her baby isn’t wearing socks.

Aside from perhaps the extra pat on the back, dads don’t ultimately benefit from lowered expectations any more than women do.

This dynamic is what incentivizes moms to gate keep certain responsibilities, wanting “control” over parenting, because they know they will be the ones facing judgement if it’s subpar. Frankly, treating dads like they are only capable of babysitting but not parenting is pretty patronizing to dads, too, and sends them the message that they aren’t naturally capable caregivers.

Men also face mixed messages about what it means to be a “good man” and how to be an equitable father and partner while still feeling the pressure to be a breadwinner, and having their identity tied to income and stoicism. These messages often reinforce toxic ideas about masculinity that not only discourage men from being involved caregivers, but in turn are linked to increased loneliness, violence and suicide rates.

This constant social and structural feedback makes it feel like an uphill battle to change gender norms in our own families. But we should, for greater equity, of course, but also because the act of caregiving itself is correlated with better quality of life for men. Gary Barker, founder and CEO of Equimundo shared that:

“Our research from around the world finds that men who report being more involved in the daily care of their children and emotionally closer to their children are happier, they are more motivated at work and they tend to take greater care of themselves.”

I tuned in to the Future of Fatherhood Summit last week, organized by Moms First and Equimundo. It was uplifting just to see men and women together discussing parenting, in times when it can be hard to find positivity out there. And particularly at a time when feminist backlash is so rampant in public life.

Reshma Saujani, Moms First founder & CEO, opened by addressing the question of why is Moms’ First would organize a dad summit. Her answer summed it up so well:

“The crisis of moms and the crisis of masculinity are not separate problems. They are symptoms of the same broken system. Two sides of the same coin.”

We aren’t going to move any closer toward gender and care equity if half of the population isn’t on board or convinced of the benefits to everyone. The idea that gender equity is a zero sum game is a false narrative that is sold (successfully in this current moment) to keep systems of patriarchy in place - to everyone’s detriment.

The conference panelists included Jonathan Haidt, author of “The Anxious Generation,” who is known for his arguments about the dangers of letting our children roam free on the internet instead of in our neighborhoods. There are many angles to his argument, but specific to dads he talked about the biological and developmental need for children to experience thrills, risk-taking, and rough-and-tumble play. This role, he points out, can be one that often suits dads. Haidt also talked about the increasing lack of “social trust” in our societies - the overestimation of danger out in our communities - which increases the burden on all parents.

Also participating was Rep. Jimmy Gomez of CA’s 34th district, who founded the Congressional Dads Caucus and famously wore his baby while casting the House Speaker vote for Hakeem Jeffries in 2023. He talked about California’s paid leave policy, which initially was exercised primarily by women, but they are seeing a steady increase in the proportion of men taking family leave - now up to 40%. Just another example of how supportive care policy benefits everyone.

There was discussion about effective strategies to build community among dads, while also rejecting the narratives about what is a “mom’s job” or who is naturally more capable of certain tasks vs. others. I’ve heard many dads express that they struggle to find content and community that feels supportive and inclusive to their caregiver identity. There just isn’t the equivalent to the mommy-blogosphere for dads, and the mommy blogs don’t feel inviting to, or resonate with men.

Father’s Day cards and gift lists are an annual reminder of how far we have to go to change social norms and ideas. Most cards still feature outdated tropes about golfing and beer-drinking, or other “masculine” hobbies; or they make fun of rather than celebrate dads’ contribution to family life. If you can’t find any cliche-breaking options out there, you can download some here.

There are some emerging examples of dad content that works against gender normative thinking and weaponized incompetence. I recently came across Dad Braids - run by a dad who decided he needed to learn how to braid his daughters’ hair, and now teaches other parents how to easily braid and style long hair. He is relatable and normalizes dads braiding hair without self-deprecation or being overly self-congratulatory.

A friend just shared the critique that most followers of Dad Braids and similar dad content are actually women. I still think that having examples out there of men breaking with gender norms is incredibly important. It’s a bit of a chicken and egg problem: if men aren’t even looking for content about hair braiding, they aren’t going to suddenly search out and follow Dad Braids; but they need examples like him to be nudged to try typically “mom” things and search for the content in the first place.

I’d love to hear from dads out there: do you have favorite resources for content and support, specific to you as a dad? What other challenges do you face as male caregivers?

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I want to acknowledge that in the same way that mother’s day can be tough, Father’s Day can be hard for many as well. I miss my dad every day, but it stings a little more on Father’s Day. Sending love to others in the same boat.

Lastly, I couldn’t end with out giving a shout out to Alex, our family’s Awesome Dad who talks to our kids about emotions and art, gives lots of hugs and kisses, is our incredible on-site family photographer, works hard, packs lunches, picks up kids, wrestles and plays endless games of Uno. We love you and appreciate you so much!

With care,

Anna

Controversial opinion: I love the movie Love Actually. Yes, it’s flawed and at times, cringy, but it’s also funny and I will continue to watch it every December thankyouverymuch. There is a scene, though, that hits a little too close to home. The American woman, Sarah, who cares for her mentally ill brother - who calls her constantly - is finally hooking up with the coworker that she’s been in love with for years. They are back at her apartment and her upset brother calls right as things are getting steamy.

The guy, Karl, asks her “will it make him any better if you answer it?”

“No.” She says.

“Then maybe, don’t answer it.”

But Sarah can’t ignore the call. She agrees to go see her brother right then - which obviously kills the mood with Karl. At that moment, Sarah realizes she doesn’t have anything left for a new relationship, because she gives it all to her unwell brother. She resigns herself to her role as a caretaker and prioritizes his needs above her own; their relationship above any other.

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In this fictional example, Sarah could have prioritized her own needs and her brother would have been fine. But the storyline is a representation of how caregiving can take over your life, and how the wishes and needs of those you care for can usurp your own, especially when you are the sole support person.

The truth is, many caregivers are not prioritizing or caring for themselves, with more than 60% showing symptoms of burnout.1 According to Caregiver Action Network:

“Nearly three quarters (72%) of family caregivers report not going to the doctor as often as they should and 55% say they skip doctor appointments for themselves. 63% of caregivers report having poor eating habits than non-caregivers and 58% indicate worse exercise habits than before caregiving responsibilities…40% to 70% of family caregivers have clinically significant symptoms of depression with approximately a quarter to half of these caregivers meet the diagnostic criteria for major depression.2

In response to the stress, caregivers are often advised to engage in self-care, with examples like taking a break, getting a massage, meditating, or shopping - i.e., do things that make you feel good (which could include hooking up with the guy you have a crush on or prioritizing other relationships). Sure, those are good things - but there are several problems with constantly pushing this message on caregivers.

As a caregiver, being told to “just take a bubble bath” feels dismissive of how physically, mentally and emotionally taxing caregiving can be. A bubble bath is also not going to change the fact that there are not enough hours in the day to schedule and attend the appointments, handle medical issues that arise, deal with drama in the nursing home, manage finances for another person, feed and pick up children and shuffle everyone to activities and on and on while maybe trying to work and sleep. Now I’m supposed to schedule myself a massage, too?

Self-care can inadvertently become another burden on our to-do lists, one that forces us to make impossible decisions between tending to our own needs in ways that can feel luxurious, and the basic needs that our loved ones depend on us for.

Perhaps most importantly: the “self-care” hype reinforces the idea that we can do and be everything we need for ourselves, by ourselves. Which is ironic when the source of burnout is the need to care for others. The focus on individual solutions suggests that our burnout and stress are personal failures, rather than systemic ones. Self care is easily weoponized by institutions to offload responsibility, and by capitalism to sell us more stuff with the promise of relief.

The real problem is that for the most part caregivers - whether we are caring for children, parents, or both - have little societal and community support. This starts with the stress of figuring out unpaid leave and managing healthcare bills, and continues with the lack of backup/respite care, mental health support and increasingly isolated lives. We may not (yet) be disabled or need physical and cognitive support, but we still need support for our health and wellbeing; we, too, depend on care from others.

For a while, I was in a bit of a Sarah-situation with my mother. Sure, part of this involves finding a balance and distinguishing others’ care needs from preferences. I and others may have found ways to protect our own peace to continue in our care roles in a way that is sustainable, and I was fortunate to have Alex and dear friends to lean on. However, it can be difficult to figure out what that balance is, and there is a lot of caregiver guilt and shame that comes into play. I still distinctly felt the lack of broader support for navigating all of the complicated financial and health decisions, and felt thrown into a complicated world that I knew nothing about and had no one to guide me.

I’m fortunate that my disabled brother has a wonderful placement with a non-profit that fully manages his daily living and caregiving while he lives in his own apartment. And my mother is now stable in a nursing home and well cared for day-to-day. I am not needed or drawn in emotionally on a daily basis the way I am for my children; but even the high-level oversight of medical, financial and social plans, guardianship, goals and activities pulls from my emotional and mental energy reserves. Many people who are managing the day-to-day for elders and children are silently drowning.

If you’re trying to figure out what to say to someone who you see is struggling under the weight of caregiving responsibilities, instead of suggesting self-care, try a simple action of care instead: drop off a meal, send a “thinking of you” text, if you’re at their house, do a chore that you see needs to be done. While we continue to advocate for policies that would support caregivers, perhaps we also need to shift the messaging from ‘self care, to ‘community care.’

Share with me, dear readers, what is one choice you make that prioritizes your own wellbeing? And what is one thing that you do for others (or that helps when others do for you) when it’s clear they need care but don’t know what to ask for?

Also - I know it’s June, but are you team ‘Love, Actually’ or is a hard pass?

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Some Good News

👶🏽 Colorado became the first state in the U.S. to pass paid NICU leave! Parents who have a premie baby in the Neonatal Intensive Care Unit will get up to 12 weeks of additional leave, paid for by the state insurance program.

🚸 Connecticut passed a bill to provide free infant, toddler and pre-k childcare to families making under $100k, and families making more capped at paying 7% of their income. It also improves salaries and funds facility improvements.

📱 care.com’s new app was designed with Sandwich Generation caregivers in mind. Their rebrand seeks to move away from simply a childcare app to one that helps people juggle the mental load and find all types of care, including eldercare, summer camps and pet care.

Hi Friends, It’s been a beat! My kids for woke up with fevers and vomiting on Mothers Day and then generously shared the virus with me a week later, and I’m still recovering. It was very on-brand for us. Alex and the kids still showered me with love, and then sent me out to shop and drink a glass of wine by myself, and for that I feel fortunate.

Now it is full on Maycember around here, IYKYK. Three kids at two different schools, two who are “graduating,” all of whom will be going to new schools next year; the assemblies, school tours, field trips, performances, summer camp forms and baseball games, plus guardianship report renewals, etc. In addition to the “normal” chaos, this means that there are simply not enough hours in the day.

But also it’s sunnier and light until 9pm, and people in Seattle are emerging and smiling at each other more, so there’s that!

I recently attended the annual auction fundraiser for the nonprofit that supports my brother Leif’s care. I am so grateful that he has been supported by them for more than 20 years, to live independently while also getting the compassionate care he needs with a built in community for social activities. They currently support 35 clients and have a long waiting list, signaling that the demand for more of this type of support is huge.

It has often made me wonder how care communities such as his could be scaled. It strikes me that all of the best private care arrangements that I have experienced for my family members - and there have been many, whether daycare, disability care, or assisted living/nursing care - have been nonprofits. From the nonprofit nursing home (which accepts Medicaid with no spend down), to my daughter’s daycare (not lower priced but very high quality relative to for-profit daycares we’ve attended), to Leif’s program, these have been by far the best care arrangements my family has experienced.

I interpret this not just as an indication that a nonprofit structure is best per se, but as confirmation that care is an industry that requires subsidy and a different set of incentives and accountability measures. Whether the subsidies come via donations or government support, not-for-profit models almost always come with quality and access-related benchmarks as requirements - not profit targets. For-profit centers must only adhere to basic regulatory standards and be able to attract paying customers.

As Elliot Haspel has pointed out in much of his research and writing on private, equity-backed childcare in the US, these profit-based models often depend upon market scarcity, and target affluent families in the markets where they operate. Providing accessible care in the places that need it most is simply not a metric for success, and decisions are driven by shareholder profit.1

Haspel does point out that large, VC-backed operations differ widely from smaller for-profit centers; in the latter category is largely family-run businesses that are “for profit” insomuch as they generate enough profit for the family to stay in business - but not enough to pay large CEO salaries and bonuses and offer competitive shareholder returns.

Research seems to support my experience when it comes to nursing and disability care as well.2 In fact, a simple google search uncovers report after report detailing the demise of quality when a nonprofit care center gets purchased by a private firm.

Ideally care center subsidies would come from the government, rather than relying on individual donors. But absent government funding for childcare, there simply are not enough of these quality, nonprofit programs to go around. We waited for a year and a half for a room at the nursing home where my mom now lives, and I felt lucky and very relieved when she got the spot. We spent years on the waitlists for both a nonprofit daycare inside a nursing home, and for a bilingual school run by a nonprofit immigrant rights organization, only to finally get calls from each when our children were about to graduate to elementary school and it was too late.

Nonprofits often have the reputation of being less efficient, disorganized, understaffed, and unsustainable. They are also the structure most used for things that generate value that isn’t quantified with money - values and society needs-based programs that people can agree are incredibly important, but that don’t drive the economy (in the short term, anyway). National parks, education, emergency services and other public goods fall into this category, but for some reason care for the most vulnerable among us, does not. At least not in America.

Still, I’m not sure how exactly this type of service is scalable, especially in a country as large as the US, given the cost of labor and regulatory compliance - if they are to truly maintain the essential human aspect of care. When I think about the successful care enterprises that have scaled in Latin America, for example, despite being businesses, they have benefitted from subsidies in the form of low-cost impact investment and grant funding that holds them accountable to social goals, not just financial ones. And really - why should caregiving be expected to be profitable?

There are some examples of nonprofits that have scaled care models. Still, they are far from reaching the scale needed to address the care crisis and reach the most vulnerable. No type of care models can escape the cost and shortage of labor, and without the government subsidies that got most through the Covid-19 pandemic.

Its hard for me to see a way out of the care crisis in America without government support to build more of what is working, with accountability to the people and families being served, not the investors. Given that any government support in the next few years is unlikely, I’d love to be proven wrong.

I wonder what portion of the Gates’ Foundation resources between now and 2045 will focus on not just individual programs and people served, but on enabling a new generation of national and global leaders and on building the foundation for social systems that will truly prioritize caring societies for all.3

What do you think? Do you have experiences with private vs. nonprofit care? Do you know of large, for-profit solutions that prove me wrong?

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With care,

Anna

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Hi friends, and welcome new subscribers! I’ve got a snarkier one than usual today because, well, it’s two weeks until Mothers’ Day. The day moms love to feel loved, and also love to crack (funny/not funny) jokes about giving up our identities, careers, bodies and freedom for which we are thanked with a card and some flowers once every 365 days.

Because we do love and choose to be mothers, yes it is intrinsically rewarding, and we do love nice gestures. But we’re getting mixed messages here. We don’t see the same appreciation and respect for motherhood and caregiving reflected in the way we are treated by society and in the home the rest of the year. Flowers are lovely, as is getting brunched in the face (sometimes), but paid leave, equitable division of care labor, subsidized childcare and universal health care would really show us we are valued. Instead:

On this sacred day, we take mom out to eat at a busy restaurant for a meal that falls between breakfast and lunch and naptime, with all of her hungry children. Genius. It is an honored and symbolic reminder of the daily patience, sacrifice, coffee, little piles of soaking wet napkins, shade from strangers, chicken nuggets, advice from assholes, puddles of ketchup, ignored vegetables, marital discord, ipads, attempts at adult conversation, choking hazards, diaper changes, lowered expectations, repeated requests for straws, stained shirts, meals made only of white carbs, eyerolls, public humiliation, and alcohol, that all go into the Mom experience.

I’m admittedly just beyond the brunched-in-the-face era of motherhood. I can go to a restaurant with my three kids and not have to pack a diaper bag, pre-feed them or deal with a mess of soggy napkins and tantrums. Mostly, anyway.

The other day, my oldest child woke me up from a not-so-great-perimenopausal slumber saying “I have this huge bump on my head and it bled a little when I touched it!” I sat up, turned on the lights, and tried not to chuckle at the giant zit on his forehead. “Oh honey,” I said, “welcome to puberty.”

Apparently he and I are not alone. Just the next phase of motherhood that many experience and no one warns you about. We’re on this hormonal roller coaster together, kid!

Happy Mother’s Day from the Bro-natalists!

This year, they really handed the next gen of Mother’s Day satire to us on a platter. Perfect timing for this procreation-obsessed administration to be sharing their plans to incentivize women to have more assets babies. The fact that exactly zero mothers appear to have been consulted is beside the point! Their proposals include:

💸 A $5,000 baby bonus

Wow, the generosity! I mean, except when you consider the financial reality of having children in the US, such as:

• The average cost to give birth is ~ $19,000. If you have insurance, the average out of pocket cost is ~ $3,000 for a non-complicated vaginal birth.

• There is no guaranteed paid maternal leave. That $5K isn’t going very far.

• Daycare averages 25-50% more than the price of rent. Where I live you can expect to pay well over $2,000 per kid, per month.

• The average cost to raise a kid 0-18 is $300,000.

But alas, universal healthcare, paid parental leave, and subsidized childcare would be WAY too much to ask of one of the wealthiest countries on earth, right? A one time gift card will have to do.

🩸 Educating women on their menstrual cycles

What exactly does this mean? Does this mean teaching medically-accurate and empowering sex-ed in schools? Nope, that is discouraged!1 Is it code for “women don’t know anything about their own bodies so let’s give them selective information”? Probably.

I’m guessing that any child rearing-related education would not include facts like:

• How to not get pregnant and access birth control.

• Criminalized abortion has made pregnancy and childbirth much less safe and led to increased maternal and infant mortality.2

• If the children you birth are not a cis/white/het/male/neurotypical, they will have fewer rights and face increased discrimination.

• Given the reality of climate change and our refusal to do anything about it, said children may not have access to resources they need in the future, like clean water.

🏅 A Motherhood Medal for SIX-time moms

I mean, wow, a medal. And just for having six kids? Amazing! Do we get to make an acceptance speech while dripping milk on three hours of sleep?

Keep in mind, the prestigious medal does come with a few tradeoffs, see the fine print (or above costs/risks). It’s apparently a move straight from the authoritarian playbook.

🎓 Priority for Fulbright Scholarships

Another idea is reserve 30% of the prestigious international scholarships for parents. I guess you gotta figure out how to get the educated folx to have more babies too! Because who doesn’t want to study agricultural irrigation systems in Burkina Faso right after having a baby?

Prioritizing parents for a fellowship also reminded me of something… it’s almost like… DEI? No, couldn’t be, that would be super hypocritical.

Give Mom a Gift that Shows Solidarity ✊🏽

Moms deserve universal paid leave, pre- and post-natal care, childcare support, and so much more. In the meantime, they will also appreciate a thoughtful gift, and I have a few ideas. This isn’t your average Amazon list of candles and bathrobes. All of the items here donate proceeds to causes that work toward these goals.

Department of Invisible Labor Tee or Tote. I am kind of obsessed with this one. A portion of the proceeds go to the National Domestic Workers Alliance.

My Body My Choice necklace from Awe. I have this and get lots of compliments on it. 100% of the proceeds go to Planned Parenthood.

This is a Mom’s World enamel pin set, Chingona sweatshirt, or one of many other feminist items from The Outrage. A portion of proceeds go to various feminist organizations.

Handmade Empower Women coin purse or bag from the Guatemalan women’s empowerment nonprofit Friendship Bridge. I’m on the board of this fantastic organization that provides microfinance loans to rural women entrepreneurs along with health and education.

Vive La Resistance tee or cap from Clare V. 30% of the purchase price goes to Planned Parenthood.

And if none of those jump out, this List from the Maternal Stress Project still nails it.

What do YOU want for Mothers Day? Or what are you gifting, if anything?

What would incentivize you to have babies?

Share your juicy ideas in the comments!

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Here’s what I wrote last year about Mother’s Day if you missed it.

Hugs & Healthy Rage,

Anna

Hi friends,

I’m finding some renewed energy with Seattle finally drying out a bit and teasing us with some sunshine. I even got motivated to do some yard cleanup over the weekend (very rare for me these days) and I was reminded of how much I enjoy doing projects with my hands with a tangible result. It’s solo and meditative and satisfying, even when you end up with blackberry thorn scratches covering your arms. These are the same reasons why I think I enjoy baking so much, but in this case it had the benefit of some much-needed Vitamin D.

Caregiving can be very mentally and emotionally taxing, as well as physical, and rather than working toward an end result, you’re mostly keeping things (people) afloat, and doing repetitive tasks - there is no cleaned up yard to admire or tasty treat to enjoy when you’re done. In fact, you are never really done. And caregiving is by nature a group project vs. a solo one. There are many rewarding aspects of caring, it’s just very different. Creative, hands-on projects, to me, are the perfect complement.

This week I’m sharing some reading suggestions as I continue to work on more in-depth essays, and solo parent three kids during spring break - send thoughts & prayers your legislators messages about affordable care!

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📰 Caregiving in the Media

I’m excited to share that on Saturday I had an essay published on Business Insider, about how I was thrust into sandwich caregiving, and sharing a few things I’ve learned along the way. The story may not be anything new for those of you who have been reading this newsletter for a while, but it’s fun to share with a wider audience and I hope it piques interest in the topic of caregiving.

Fellow sandwich caregiver shared her story in the LA Times, tying it to the heartbreaking story of Gene Hackman and his wife Betsy Arakawa. She makes a compelling call to action for adult day programs, particularly for those with dementia.

🏥 Care Economy Resource Hubs

I’m working on an essay about the possibilities and complexities of care privatization and profit. If you want to read about how market-based solutions to the care crisis is being looked discussed on a global level, check out The Care Economy Knowledge Hub. It uses the 4R framework to look at impact: Recognize, Reduce, Reward and Redistribute.

The Holding Co also has great resources on market based care solutions, with a US focus. Their interactive investin.care website allows visitors to explore different areas for potential investment, market size, care service and product design, and more.

📚 Books

[FICTION] Last month I read Nightbitch by Rachel Yoder, which was recently made into a film (that I haven’t seen yet). It was one of the more bizarre books I’ve read in a long time, but also pretty fun. Essentially, an artist and mother to a toddler finds herself transforming into a dog. It hits the nail on the head in its descriptions of motherhood’s inevitable identity shifts and rollercoaster emotions, but flips them into a weirdly funny, magical realist jaunt.

[NON FICTION] I just finished The Electricity of Every Living Thing by Katherine May. This is a “woman goes on a long walk to figure things out” book, in the vein of Wild. Katherine is a British, middle-aged woman with a husband and kid who realizes that she is Autistic. I found it really interesting to read the perspective of someone who is Autistic describing the process of suspecting, diagnosing, and reflecting on her past and present experiences and challenges. I have to say though, she did NOT make the South West Coast Path sound particularly appealing! And it was ‘not appealing’ in the same way that my neurospicy kid would describe many things as they are happening, even if you know they are kind of enjoying it and will reminisce about it fondly later on. Might have to bookmark that topic for a later newsletter…

That’s what I have for you this week, friends. Next week you can expect some Mother’s Day-themed musings. Until then, let me know in the comments if you have any good reading recommendations - especially books!

xo Anna

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We lived less than a mile away from the ILC - “The Mount,” as it is affectionately referred to - and my children were on the waitlist for years but never got in; clearly there is appetite for this kind of age integration, with few options that provide it. One recent poll suggested that only about a quarter of Americans knew of a place in their community that brings together care for elder adults and children such as this one.

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The Mount is one little intentional microcosm in a city that is otherwise not very age inclusive. I didn’t notice the lack of age diversity here in Seattle - or other cities in the U.S. - until I became a caregiver myself. Initially I couldn’t exactly put my finger on it, but after having children I was suddenly lonelier, and felt that so many of my previous activities were off limits. Even if you aren’t the kind of parent who is hyper worried about sleep and feeding schedules, everyone else is likely out somewhere that is not very inviting with a baby in tow. My social life became centered around activities specific to moms and babies.

As I became even more immersed in caregiving when my parents’ health declined, I began to think more about this, because I saw it on both sides of the spectrum. Children were welcome in specific spaces, like daycare and kid museums and playgrounds; elderly adults hang out at places designed specifically for them like community centers or assisted living homes.

You really just don’t see as much intergenerational mingling in public spaces the way you do in other geographies: more rural areas, but especially other countries. Now when I go out and look around, I can’t not see it: most public “non kid” places are filled with people that appear roughly between the ages of 20 and 50.

While I was feeling isolated at home with small children, my parents were isolated in their homes in different towns, both a couple of hours away. After retiring, they spent less time with friends and their communities became smaller. Interestingly, both seemed to experience cognitive decline just a few years after retirement - which can be exacerbated with social isolation.

The Benefits of Intergenerational Relationships

There is a certain magic that happens when young children spend time with older adults. Elders often have more time and patience for children, and can be more present to spontaneous conversation, teaching and knowledge-sharing of a different kind than children may get form their multitasking parents. Likewise children can be funny and joyous to older adults, and can help combat loneliness and boredom. As the video above beautifully demonstrates, even with simple everyday tasks, elders and toddlers have to figure out how to meet each other in the middle and pool their abilities in a way that builds character and understanding.

I can’t help but think that this type of contact across generations also helps us to keep historical perspective that goes beyond what we can read in written accounts. There is something remarkable in hearing your grandparents tell stories about another era, or watching a five year old teach grandma how to use an iPhone. In each case, the learning is going in both directions and minds are opening.

There is indeed research showing that participation in programs like the mount and engaging in meaningful cross-age relationships decreases social isolation and increases older adults’ sense of belonging, self-esteem and well-being, while also improving the social and emotional skills of children and youth participants. Anecdotal stories from the intergenerational programs that exist abound with heart-warming stories of positive impact on people’s lives. 1

Why Are there less opportunities for multigenerational contact?

Geographically spread families and fewer multigenerational living arrangements surely does not help create opportunities for age-diverse relationships. But there’s more to it.

In U.S. cities the cost of housing has become largely prohibitive for families, and there is evidence that expensive cities tend to have fewer children. They are not designed for outdoor social interaction the way many European and Latin American cities are. Many American cities have been designed for cars to get from point A to B, not for kids and families to walk outside their homes and connect with each other. The classic public squares in many other global cities are conducive to a mixture of kids playing and adults hanging out, without the interruption and safety issues that cars pose.

Despite the fact that our cities have not become objectively “less safe,” children in the U.S. have less independence and play outside on their own far less. I can certainly remember grabbing my bike and taking off for the day, or going out into the neighborhood to find the pack of roaming kids, only to come home many hours later, no big deal. Kids don’t do that these days, and if other kids aren’t doing it, it’s hard to get your kids to. Things like increased screen time, parental anxiety and over scheduling are said to be driving this, and all of it is linked to the increase in mental health struggles among youth today.

I’ve come to see increased age segregation as another way in which our culture exposes its true values and priorities: public spaces in US cities have been made and maintained for those who are in their prime working years; active contributors to capitalist production. Those in a life stage of dependence rather than efficiency are not prioritized, they are tucked away.

How can we bring intergenerational mingling back into our modern lives?

My children admittedly don’t have much contact with elders, especially these days. Most of their time is spent with us and other adults and children our ages. How do we fix this - or can we? Not all children can go to school or daycare alongside elder adults. Physically and culturally, U.S. cities and the people who live in them are not going to shift overnight.

Some cities have gotten more creative about helping parents get out in public more with children. Cities in Spain and Portugal are known to have playgrounds stationed right next to outdoor seating areas of restaurants and bars - a game-changer for parents. And in the nordic countries, parents simply leave their babies bundled in the stroller to nap outside when they pop into a cafe or restaurant - something that would get Child Protective Services called on you in the United States. Portland is somewhat unique in the U.S. as it has a lot of pubs that are very kid-friendly. Parents get to eat and drink microbrews while the kids go to town in a play area designed just for them, but within a line of sight.

But its not just about providing a place for kids to play while mom and dad (and maybe grandma) get a drink or a meal in peace. Little interventions in how cities and businesses are designed can have a big impact, but they have to go beyond restaurants and or a single innovative care center.

Religious centers may be the most reliable places you will still find age diversity, and I’ve often wondered how this type of community could be created without organizing around religion. Public parks and community centers can be leveraged for age-inclusive programming. There are ideas out there for what purposefully designed intergenerational communities within cities and housing could look like, there are just few existing examples so far.

There are other small ways that cities are creating opportunities for connection. The French Postal Service has a program where postal workers pop in weekly to check on elderly people, and share reports and photos between them and family members. A Dutch supermarket chain introduced slow checkout lanes for elderly shoppers who aren’t in a hurry and want to have a chat.

These ideas may seem “inefficient” in our era of hyper efficiency and cost-saving measures. But in the context of a loneliness epidemic that is impacting our health, maybe it’s not so inefficient after all.

What do you think - Do we need more intentional intergenerational connection? Do you have other good examples? Is this missing element specific the U.S., or am I romanticizing other cities and cultures? Share your thoughts!

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Sara Josephine Baker, Pandemic Pioneer

In the early 1900s, Sara Josephine Baker was a physician whose contributions to public health essentially predicted modern pandemic response strategies. Working in New York City's public health system, she noticed that more children were dying in certain neighborhoods than in war zones. Her solution was to create the first systematic public health tracking system, including what we now call contact tracing. She trained women to go door-to-door, teaching hygiene and infant care and introduced groundbreaking infectious disease policies. During the 1918 influenza pandemic, many of her strategies were remarkably similar to COVID-19 responses: masks, social distancing, and community education. Her work is the basis for modern-day pandemic research by epidemiologists like Dr. Jennifer Nuzzo.

Harriet Tubman, the underground… midwife?

Most of us do know Harriet Tubman as a revolutionary who helped enslaved people escape via the Underground Railroad. We hear much less about her incredible medical and caregiving skills. During the Civil War, she worked as a nurse, cook, and spy for the Union Army, but I recently learned that she was also a skilled midwife. She not only helped deliver babies during dangerous escape missions but also provided crucial medical care to both enslaved and free Black communities. She often used herbal remedies and had a reputation for healing techniques that white doctors at the time didn't understand. Susan Burton, carer for formerly incarcerated women and advocate for drug treatment and criminal reform, has often been referred to as a modern day Harriet Tubman.

Rose Schneiderman, “bread and roses” labor organizer and suffragist

Schneiderman was a Polish-born American labor organizer who fought for workers’ rights, particularly for women in the garment industry in NYC. She advocated for increased safety and higher wages for factory workers and was a founding member of the ACLU. Schneiderman was a feminist and suffragist who argued that political enfranchisement of women was necessary to improve their poor working conditions, and she is credited with expanding the movement from purely middle and upper class to include working class women. She is one of many women who set the stage for today’s labor organizers like Ai-Jen Poo.

"What the woman who labors wants is the right to live, not simply exist — the right to life as the rich woman has the right to life, and the sun and music and art. You have nothing that the humblest worker has not a right to have also. The worker must have bread, but she must have roses, too. Help, you women of privilege, give her the ballot to fight with."

—Rose Schneiderman

Thinking about my father, who would have turned 83 tomorrow. Miss you every day, dad. I know neither of us have ever been so sure about heaven or the afterlife, but I can’t help but hope some form of you is smiling and dancing on a Mexican beach right now. ❤️

Let me know how you all are doing out there! Reach out in the comments or reply to this email, I will respond! xo Anna

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Writing about anything political right now is daunting and frankly, depressing. There is so much content out there, and the destruction is coming at a pace most of us can barely keep up with - especially when we’re just trying to get through the day juggling care and paid work. I imagine, though, that many other caregivers are particularly concerned about the recent dismantling of the Department of Education (DOE), and the proposed massive cuts to Medicaid. Both of these moves will have devastating impacts for caregivers, and doubly so for those of us in the sandwich.

What exactly could happen if some of the main governmental support systems we depend upon as caregivers go away overnight? We now know this is a very real possibility, though how exactly it will impact us directly still feels unclear.

As I’ve shared here before, both my mom and brother depend on Medicaid. My brother is severely disabled and my mom worked her whole life and saved for retirement, but ended up with health issues and dementia at a relatively early age. Even a decent retirement savings wasn’t enough for the care she needed. My children go to a public school that receives Title 1 federal funding - a federal subsidy for schools with a high percentage of low income families.

Naturally this has me thinking a lot about what’s at stake for my family, but also for all of the families that in some way depend on these critical services and supports - which realistically, is most of them.

What does gutting the Department of Education mean for children and families?

While states do have significant control over their schools, the federal government has historically run several programs that, in a nutshell, leveled the playing field. I mentioned Title 1 above, which supplements schools with significant financial need to provide things like math and reading tutors and free school lunch to improve the likelihood and rate of educational attainment for its students.

A significant proportion of the cuts to the DOE personnel were those who worked in Federal Student Aid and the Office for Civil Rights, which is tasked with “preventing, identifying, ending and remedying discrimination against America’s students.”

This matters because 1) socioeconomic status is highly correlated with educational outcomes and 2) schools in wealthier areas end up with incredibly well-resourced schools, and PTAs that can pay entire additional staff salaries and purchase fancy equipment, while low income schools may just hope to have enough to cover back-to-school supplies so that kids don’t go without the basics that they need.

I wonder if progressive(ish) Seattle (and maybe other areas) would consider going back to the bussing system it implemented to de-segregate schools between the 1970s and 2000. The program was ultimately phased out with pressure from wealthy, white families who claimed all-too-familiar arguments of “discrimination.” I’m sure this would be a consideration today, with a bussing program putting the district at risk of losing any remaining federal funding. While the bussing system did mean long rides for some, it also meant diverse, integrated and more equitable schools.1

My dad and stepbrother both got bussed from white areas to mostly black Garfield High School in South Seattle (where, side note - my dad was in school with none other than Jimi Hendrix!). I’ve heard them both speak very positively of Garfield and their experience. It’s a different landscape now though, with many wealthier (white) families opting out of public school entirely.

In addition to supporting low income schools, the Department of Education collects and acts upon national educational data, oversees programs for students with disabilities and ensures they get the support needed, manages federal student loan programs, and provides teacher training programs in needed areas (notably special education).

Without the DOE overseeing these aspects of public education, it’s very likely that many districts will have no oversight with regards to equity issues. This will particularly impact already disadvantaged schools and districts, and will be worse in red states - which already have the worst educational outcomes.

And what about Medicaid?

Trump’s budget resolution is aiming for $880 billion in Medicaid cuts over ten years. Medicaid is jointly funded by the federal government and states, and is the largest source of federal funding for states overall. The program provides long term, emergency, primary, behavioral health and specialty care for 80 million low income and disabled people - that’s one in five Americans.2

Nursing homes and eldercare costs are skyrocketing beyond what any normal person can pay over the long term. In more than half of nursing homes nationwide, 80-100% of residents are on Medicaid, which is about 63% of nursing patients overall. Where, exactly, will these sick, elderly people go without Medicaid? Or with payments significantly reduced, how will nursing homes - that already struggle with staffing - continue to operate?

Add this to the fact that with Baby Boomers aging and the percentage over 80 set to peak in 2027 and hold steadily high over the next fifteen years - which is set to be a crisis even without cuts to medicaid.

It’s not just eldercare at stake though. Many children in low income families benefit form Medicaid, and low income women’s births are covered by the program. One in four childcare providers depends on Medicaid for health insurance - a loss that would deepen the existing childcare crisis. Disabled individuals who are unable to work are supported by Medicaid. It is one of the most stable, successful, long-term US government programs that has had bi-partisan support for decades.

What exactly will happen? Inequality and homelessness, which is already a problem in Seattle and other major cities, will get worse. I can imagine more people - women in particular - will be pushed out of the workforce in order to care for family members.

My brother and my mom, along with millions of others, are both able to live simple, yet dignified lives despite significant disabilities, and this is because of Medicaid. They are not taking advantage, they are getting fed and cared for because they cannot provide for themselves. My children are getting a decent free education in a diverse learning environment. These are the most basic things that our taxes should pay for, right?

Could governmental agencies be more efficient? Of course they could - just as most businesses could be. Does room for improvement justify burning entire agencies to the ground at the expense of kids’ education and disabled folks’ lives? Of course not. What do we do about it? I don’t know - if you have ideas beyond incessantly calling our elected officials, or moving to Europe, please share them.

While we have yet to see what kinds of challenges these actions will face in the courts, what we do know is this: the impacts will disproportionately fall on the most vulnerable members of our society - children, low-income populations, and the elderly. And by default, on caregivers to those populations.

Whew. That was a depressing one. So I’ll end with a quick positive piece of news that a judge has ruled Musk’s dismantling of USAID as unconstitutional, based on a lawsuit filed by a group of AID workers. I know that there are carers and readers of this newsletter who were directly impacted by the USAID shutdown, and while it is unclear what long term impact the ruling will have, for now it is a win to be celebrated.

I’d love to hear from you - what are your concerns, predictions, or plans if your families depend on these federal agencies/services?

Maybe I should have waited until I was off the plane to turn on my phone. Not rushed to turn it on when the wheels touched down in Guadalajara, while I remained involuntarily glued in my middle seat with no where to go, forced to semi-contain panic-breaths and sobs in a too-close vicinity to strangers.

But it doesn’t matter if I had read the text saying “your beloved father is gone” then or ten minutes later, as I was exiting into the chaos of the airport. Either way, I would still have been panic-breathing and sobbing in front of strangers, feeling the air close in on me, as I walked through customs, found a taxi, and endured the ride to a hospital chapel in a foreign country. Those minutes in the plane, on the jetway, will be forever etched into my memory.

It’s been one year and one week since that day. For the first anniversary of my father’s death I was back in Mexico, and leading up to it, those defining moments when my world changed forever played over and over in my mind. I was worried about how I would feel repeating the journey to the conference that one year ago I had been in route to (but never made it). There was a moment when I thought I might not make it this year, either.

As soon as I stepped off the plane, I began to get alternating calls from my mom and from her nursing home. The connection wasn’t stable, so for several minutes walking through the airport, my mind went through all the possible scenarios - my mom is sick, maybe she is dying, I will need to once again scramble to get home in distress; she had become aggressive with staff; maybe Medicaid would not pay for her care any longer…

When I finally reached my mom and could hear her, she told me that my brother had gone missing. Immediately skeptical, but concerned and confused, I said ”Explain it to me mom, what happened?”

She struggled to find the words. “Well, so I’m living in this place now…”

”I know where you live, mom” - I cut her off. Her insistence in telling me about where she lives, even though I have been the one to organize it from beginning to end and of course where I visit her, still rattles me every time.

“Well someone came in here and woke me up and they had brought Leif to visit… “ she struggled to find words and piece together a coherent story. “Anyway now no one knows where he is, he has gone missing.”

I knew this was likely (unintentionally) fabricated, but even with dementia, she had never done something quite like this before. And the nursing home staff had been calling me as well. As Leif’s guardian, I would have been the first one called if he had actually gone missing. Nevertheless, I promised my mom I would check in with his care team for peace of mind. Sure enough, a few minutes later, it was confirmed that Leif was in his apartment, eating dinner with staff. I called my mom back to reassure her, and she calmed down, apologetic for creating a “kerfuffle.”

I was once again reminded that the care sandwich life follows you everywhere, and knows no boundaries.

The actual anniversary of my father’s death was the busiest day of the trip. That morning I was on a panel discussing women’s health investing followed by a full day of conference sessions. For much of the day, the anniversary lingered in the back of my mind, but I had conveniently compartmentalized the emotion in order to focus on public speaking and networking. I ignored the pings of texts from sympathetic friends checking in.

Toward the middle of the day the feelings were creeping in, as I looked around and thought about being in the country that my dad loved so much, and also where he spent his last days.

I was fortunate to be surrounded by several close colleagues who are now dear friends, including one who also lost her dad many years ago. She checked in on me throughout the day, and gently offered to take some time out with me before our evening event to remember my dad and perhaps partake in a small ritual to commemorate the day. I liked the idea, but felt reluctant. If I let myself go there, if I opened that box where all my feelings were neatly tucked away, what would happen? How would I function in this professional environment if I allowed this personal emotional experience out into the open?

But also: what would happen if I didn’t allow it out? How would I feel if I didn’t take the time out to commemorate the day and connect with my dad?

We had a few minutes before needing to leave for the party to celebrate the closing of another chapter - the wrap up of the foundation I’ve worked with for more than half of its 20 years of existence, which in itself was emotional. My friend came to my room and we listened to Buena Vista Social Club, which always reminds me of my dad, as we talked about him and the legacy and memories and love I can hold on to. She led me through a guided visualization to feel his presence, and with that I finally let go and the tears flowed. I’m so thankful that we had that moment, I don’t think the day would have felt complete without it.

Honestly it’s not always the “big days” that hit me the hardest. It’s the times I catch a glimpse of my profile in the mirror or a photo and see my dad’s nose; when I see my brother and recognize my dad’s grin, or when pictures of him pop up in my “on this day” photo feeds.

When I hear has hearty laugh in my mind, and imagine his giant grin. When I recall him enjoying a meal with gusto and our jokes about his lifelong membership in the Clean Plate Club. When I see windsurfers and sailboats and recall our days camping at the Gorge.

I want to tell my dad that my brother Leif is doing well, but that it’s hard being the only family member left that he can rely on, who checks in and looks out for him. But we’re alright, and we’re making it work.

I want to have a conversation with the version of my dad from a decade ago about the absolute madness going on in the United States right now. He wouldn’t lie to me and say it’s going to be ok, but his presence and thoughts would be comforting and make me feel like somehow it will be.

I want to tell him about my work and how much my kids loved Costa Rica, and reminisce about those first trips to Latin America that he took me on, and how I hope my kids’ experiences are as powerful for them.

In some ways I’m still trying to grasp that my dad is really gone. I still haven’t brought myself to listen to the interview I recorded with him the last time we saw each other. But I will, and for now, I’m comforted just know it is there when I need it.

Have you gotten through a first anniversary of losing a loved one? What did you do to honor their memory, and your emotions?

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In case no one has told you lately…

Many of you are in the trenches with little kids, ailing parents, perhaps siblings or other relatives to care for - maybe all of the above. You do all the things that no one else sees. I see you. I’m right there with you. And I’m so grateful to all of you for being here and to those who have reached out to me directly to share your own stories.

Your job today is to do something for yourself - without added pressure or stress. Go on a walk. Daydream. Take yourself out for ice cream or an almond croissant. Curl up in bed early with a good book (from your ‘want to read’ not your ‘should read’ pile). Watch something funny.

Or, if you want to recognize another caregiver in your life, something as small as a handwritten note, a phone call, or giving them a little break from caregiving would likely mean the world.

I’m leaving for Mexico on Monday, where we’ll be celebrating the end of an era for the foundation I work for. I am also mentally preparing for this to coincide with the one year anniversary of my dad’s death - I can’t believe it has been a year. Needless to say, it’s going to be emotional all around. I’m grateful that I’ll be surrounded by colleagues who have also become dear friends. I’ll share the highs and lows with you when I’m back.

I am working on some interviews with other caregivers that I’ll begin to share here this spring! In the meantime, I’ve created a google form that you (or anyone you share this with!) can submit if you’d be interested in sharing your story on Gen Xandwich. I’m hoping to bring a range of helpful and unique care perspectives to the newsletter.

Fill the form out HERE If you’re interested! I’ll respond to everyone who fills it out.

❤️ Anna