Most people think stress is the problem. It is not. The real issue is that we rarely complete the stress cycle, leaving our nervous system stuck in a constant state of activation. This shows up as tension, fatigue, and difficulty focusing, especially at work. In this post, you will learn how breathwork helps regulate your body, improve performance, and build the kind of confidence that actually lasts.
Between the year-end sprint at work, the holidays, and #allthethings, this stretch from Halloween to January 1st can feel like a black hole of chaos. (Anyone else? Bueller?)
What if the most productive thing you did during any “push” season… was sloooooow down?
As a recovering perfectionist and Type A planner, I used to think rest was something you earned 𝑎𝑓𝑡𝑒𝑟 getting everything done. But when I created my “Power of Rest” program, the research (and my own burnout recovery) taught me something powerful: micro-moments matter. In fact, sometimes the reality is: that’s all we feel like we realistically have.
Even a 5-minute mental break every hour can significantly boost mood and help sustain attention. Small rest = big results.
Here’s the challenge: many of us know this… but we don’t do it.
If slowing down feels uncomfortable, that’s normal - it’s a new skill for many. In this clip, I share one mindset shift that can help quiet the guilt and give yourself permission to pause.
What helps you integrate calm amidst chaos? I'd love to hear your go-to strategies - the more we see others modeling rest, the easier it becomes to give ourselves permission to do the same.
Learn more about signature programs and speaking style: https://www.aspirewithaileen.com/corporate-wellness
If you're ready to book a consultation to discuss your speaker needs: https://aspirewithaileencalendar.as.me/corporatewellness
This year at the The IgA Nephropathy Foundation SPARK Conference, I shared new content about how patients and caregivers can tap into different forms of rest to support their minds, bodies, and spirits. Whenever I speak, my goal is simple: help every person walk away with at least one practical tool they can use in their daily life.
I didn’t expect to hear from two audience members who had used tools from last year’s session:
😮💨 One woman shared that she began a simple breathing practice and no longer needs a medication she once relied on.
😴 One man said he now naps daily and feels noticeably happier and more energetic (a major win when managing chronic illness).
Running your own business can feel isolating, and I sometimes wonder if I’m making an impact. But these moments remind me why I do this work AND inspire me to let others know when they have made a difference in my life!
A reminder for all the helpers: you may never know the depth of the good you’re doing.
PS This was my first time having the honor of a graphic recorder - shout out to Paul Williams for his incredible work capturing messages during the session!
We all have moments that clarify our purpose—those quiet affirmations that we’re on the right path. For me, those moments often come through the people I meet and the stories they share after my talks. But the roots of that purpose go much deeper. In this post, I’m reflecting on the personal legacy that fuels my work, the values passed down from my mother, and how they continue to shape the way I show up for others with empathy, intention, and heart.
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At the end of one of my keynotes, a woman came up to me with tears in her eyes and she said, thank you so much for this. This came at the exact right moment in my life. Now a favorite quote of mine is, to know that even one life has breathed easier because you have lived is to have succeeded. So this quote is actually one I use in the eulogy for my mom. And she really is the inspiration behind much of my why. She instilled this passion for helping others, of really being of service in the world in me from such a young age. And it's that sense of purpose really from her that's been a huge driver for my entire career. Knowing that I can help people feel like the load of life is lighter and helping them feel more hopeful about the future, that's what this is all about for me. And also, it feels like a way of honoring my mom's legacy.
Burnout isn't just a professional interest for me—it's personal. My journey into understanding and supporting others through stress and burnout began with my own experience. This lived experience deeply impacts the work I do today. In this post, I’ll share how my story shapes the way I support others and why a mix of empathy, evidence-based tools, and realism makes all the difference in burnout recovery.
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One of the things that I think helps me in providing support to employees and organizations on stress management and burnout is my own burnout story. In 2019, after 42 weeks of pregnancy and 36 hours of labor, I became a mom. And only a few months after that, my own mom was given a terminal cancer diagnosis. She ended up living for two years, but we had a little pandemic sprinkled in there for good measure. And those few years of transitioning to becoming a new mom caregiving for my own mom, as well as my business really pushed me past that edge and led to my burnout in 2021. So while you don't need to have experienced burnout to support others, I do think it really helps me show up with more empathy. And not only do I bring in evidence-based strategies for stress management and burnout recovery, but I bring this realistic perspective about what's feasible because there's nothing worse than when you're burnt out,
being told, hey, here's the solution, and it's something that's completely untenable. So one of the things I hear in the feedback from my programs is that people appreciate that vulnerability in my share and that they also feel more inspired and hopeful that recovery is possible because of that story as well as the tools that I share.
Sometimes, the most memorable well-being lessons come with a bit of shock value—in the best way. What started as a niche, unconventional topic has become a more mainstream conversation about holistic wellness. And the best part? Years later, participants still tell me how this session transformed how they shop, choose, and care for themselves. In this post, I’m sharing the story behind that program—and why lasting impact is the heart of everything I do.
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Let me tell you about a time that I scarred people for life, but in a good way. So one of the most enjoyable parts of the well-being programming that I do is that I get to be creative and really approach well-being from this holistic perspective. So one of the more atypical programs that I run is called You Are What Your Skin Eats. And it's all about the products that we use and the impact that they can have on our health. And this used to be a pretty out of the box topic, but now it's way more mainstream of a conversation. And one of the things that I find most rewarding is that I have people who attended that program seven years ago who say every single week it still guides their decision making. And that's really the whole goal behind why I do what I do is to really see that impact being lasting in people's lives.
Effective workplace wellbeing programming isn't one-size-fits-all—it requires flexibility and a deep understanding of your organization's unique needs. What truly transforms this work is the opportunity for ongoing collaboration. When organizations and wellbeing professionals become thought partners, they create a dynamic relationship that evolves with employee needs. The result isn't just better programming—it's the continuity of care that builds trust, drives engagement, and creates lasting cultural change within your organization.
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Three of the main ways to work with me for well-being programming are employee off-sites, ERG-focused events, or conference keynotes. So pretty much you name it, I can support you. I do programming as short as, say, 30-minute stretching and yoga sessions as a certified yoga instructor to as long as half-day programming. One of my favorite things that's happened in my work as a speaker is having organizations that I've partnered with since 2018. These are some of the most rewarding because we become thought partners for one another. Each year I meet with these organizations and we say, okay, what are the newer challenges? What are the things that employees really want to have addressed? And then I can come up with new and innovative programming to really support those challenges and needs. Being able to see those familiar faces, build those ongoing relationships really helps me feel like I'm making that longer term impact and having that continuity of care that's so valuable in this space.
Career Coaches and Workplace Wellbeing Speakers offer unique value through our dual perspective on talent retention. Having witnessed thousands of career transitions firsthand, we understand exactly why employees leave—and what makes them stay. This allows us to address specific challenges that broader wellbeing programs often miss, effectively bridging the gap between organizational initiatives and individual employee needs. This targeted approach creates tailored solutions that complement existing HR efforts, ultimately strengthening retention and boosting workplace satisfaction where it matters most.
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Hi, my name is Aileen Axtmeyer, and I'm a Career Coach and Workplace Wellbeing Speaker. One-on-one, I help people land work they love, and then I work with organizations to help them retain that talent. I have the unique perspective of having almost two decades of coaching experience and seeing why people leave their jobs. And it's such a joy to get to be on the other side of the table and try and help organizations keep those people around. My background in psychology, counseling, and other stress management modalities gives me that kind of versatile, tool to add to organizations toolkits. A lot of organizations will have bigger programs or bigger solutions for well-being but sometimes more of those unique topics for employees at hand get lost in the shuffle. And that's where i really like to be of service to be kind of the bridge of any gaps in well-being programming to make sure all employee challenges are being addressed.
In our pursuit of stress reduction, we've overlooked a powerful truth: not all stress harms us. The workplace wellness conversation often focuses exclusively on eliminating pressure, but what if some stress actually fuels our growth?
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Do you know what eustress is? About 90% of people say no when I ask them in my wellbeing workshops. And I think that's part of the problem. We talk about stress all the time, but this important part of the conversation is being left out. Eustress means good stress. It's when we're pushed just outside of our comfort zone and we're challenged and we have to rise to the occasion, but we're not quite overwhelmed. So think about when you're using a new skill at work, or maybe you have that big presentation And you feel confident about doing it, but you still have to really be on for it. Those are those times when we grow personally, we grow professionally, and we need those. It's part of the human experience. When we think about employee well-being, we think about stress management, we need to acknowledge this big piece of the puzzle. And for the other piece, we can talk about strategies and tools that help tell our brains and our bodies that they're safe when they might be telling us otherwise.
Don't underestimate the power of a five-minute break. While wellness initiatives often focus on major interventions, these tiny pauses between meetings can significantly impact your workday.
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One of my favorite tools to give employees for stress management as well as burnout recovery is five minute breaks. Now, don't roll your eyes. This is a tiny thing, but I promise it makes a big difference. So there's actually a lot of science and research behind this that shows that when we have tiny, tiny breaks, even as short as those five minutes between meetings or even just throughout the day, our brains have that ability to recover. It can be really restorative. And in fact, participants in one study in 2021 from Microsoft saw that they had a 40% lower reduction in stress levels and they were 13% more engaged in their next meeting.
A lot of times when we think about well-being, we think of these huge interventions or these huge changes, but I think sometimes those aren't accessible and these little micro moments, those micro actions can be incredibly powerful as well. People need accessible, simple, practical and implementable strategies more than ever before.
Every wellbeing initiative begins with understanding your unique needs. Whether you approach me with a specific program in mind or employee feedback highlighting concerns, my consultation process creates space to discuss challenges and define success. I love designing targeted programming that makes employees feel seen and valued—even when underlying circumstances can't be changed. This collaborative approach transforms workplace challenges into opportunities for meaningful support.
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When I work with organizations for wellbeing programming, I always start with a consultation. So sometimes people come to me really dialed in on exactly what they want to do, date, time, location. Other times they've maybe just gotten some employee survey results or have been hearing some pain points, and they're trying to brainstorm different ways to address those challenges. I want to be that place where you can talk about those challenges, think about what success really looks like for a program, and then help you get where you want to go. An example would be Leadership Development Day for a big organization I did this past summer. They had a return to office mandate for an extra week per month. And there was a lot of stress, anxiety, and they knew this was going to add some more challenges to those employees. So I couldn't fix that. I couldn't change that. But I knew that I could listen to some of the things that had been shared and address that specifically in my programming so that employees feel seen, heard, and valued, which is a key to burnout prevention.
I recently had the opportunity to support an HR team onsite and it was with an organization that I do company-wide well-being programming for. I had done a program called the Science of Kindness, only a couple months prior. While I was at the organization, I used the restroom. When I went to wash my hands, I saw this basket there, and it had all these different products, and it said: “Use what you want, take extra time to take good care of yourself, and leave things for other people.”
Next to the basket was a sign that said “Year of Kindness” and it had an employee's name. I ended up going and talking with that employee and she shared that she had attended that Science of Kindness training and that it really impacted her and inspired her to do more good for both herself as well as for those around her. She shared that it really made a difference in her life.
This is my dream in action. Whether speaking at a large conference or with a small team onsite, I never want people to simply think, ‘Oh, that’s interesting,’ and then go back to life as usual. I want them to feel inspired and empowered to incorporate these tools well beyond our time together.
In every session, I offer multiple tools with the hope that each person walks away with at least one that really resonates and feels applicable to their life beyond our time together. Each time I hear that someone has taken action, it’s a powerful reminder that we all have the ability to create positive change for both ourselves and for those around us.
Learn more about signature programs and speaking style: https://www.aspirewithaileen.com/corporate-wellness
If you're ready to book a consultation to discuss your speaker needs: https://aspirewithaileencalendar.as.me/corporatewellness
Ever find yourself doing the "just one more scroll" dance at midnight? Or perhaps you've mastered the art of the "five-minute email check" that mysteriously transforms into an hour-long digital rabbit hole? Don't worry—you're in good company!
Most of us have experienced that moment of shock wondering "Where did the time go?" as we emerge from a tech trance.
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If you feel like there's not enough time in the day, here are some strategies to create different relationships with technology to improve that feeling. So the first step is we have to be self-aware. Get a sense of your screen time statistics, but not just for your phone. Check out your relationship with your laptop as well.
Now I know for different people, there's different realities of how possible it is or doable it is to close the laptop, give it a bedtime. But for some of us, we can explore hmm, is there room to create a little bit more of a boundary and say, this is the bedtime for the laptop, this is the bedtime for my phone, and create some space for yourself in those ways. The second thing is when we integrate any tool to elicit behavior change when it comes to our devices, know that these things are addictive. Habit change is also very hard. So understand that willpower will wane at a certain point. When it happens and that tool or strategy loses its impact, the key is to recognize, hey, you're human, and then try something new.
Happiness isn’t just about big milestones or grand achievements—it often lies in the small, everyday moments. One way to tap into this daily joy is through the practice of savoring.
As part of The Science of Happiness program at Yale, Laurie Santos explores this concept in a video that’s free and accessible to all. In this Youtube short, you’ll find a quick breakdown of how savoring can enhance your happiness:
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Here is your happiness assignment: Explore your relationship with savoring. Now, I'm going to link to a video that Lauri Santos delivers as part of her The Science of Happiness program at Yale. Highly recommend it. It's free and accessible to all, but this little thing can really permeate all areas of your life, and it's a practice that you can cultivate. And some people are natural savorers. So if you think about something that is a little pleasure in your day, so maybe that warm cup of coffee, first thing in the morning? What's one thing that you can think about that's pleasurable in your day to day? And, really be mindful and attuned to any sensations that go on in that moment. So that's the process of savoring. And the science shows that this can extend those feelings of joy, of contentment and influence our happiness.
In the pursuit of a more fulfilling and balanced life, sometimes the simplest solutions are the most transformative. If you're looking to enhance both your professional and personal well-being, there are two essential books that offer profound insights and practical advice.
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Here are two books that can really impact your work and your well-being. The first is Breath: The New Science of a Lost Art by James Nester. About 90% of us are breathing incorrectly and I don't share that to scare or fear-monger but to build awareness that a lot of us are disconnected from the best way of creating this foundation of well-being within ourselves that can really impact all areas of our lives. The other book I want to mention is Designing Your Life: How to Build a Well-Lived Joyful Life. This is one of the books I recommend the most for my clients and for people just thinking about how to re-engage with their work and re-engage with activities both in and outside of the office that bring them joy. It's filled with activities and prompts to help you really get reflective about how you're spending your time hope that these books help you take good care of yourself no matter what you're up to.
If you've ever found yourself tossing and turning in bed, desperately wishing for sleep that just won’t come, you're not alone. Sleep is one of the most vital components of our well-being, but when we’re stressed or burned out, it can often be the first thing to suffer. Whether you're dealing with burnout from work, caregiving, or just life's demands, the quest for restful sleep can seem elusive. Fortunately, there are practical strategies that can help you reclaim your nights and restore your energy. Let's dive into some effective tools and techniques to improve your sleep quality, even when you're feeling overwhelmed.
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if you want to know more about the stages of burnout or the different characteristics and qualities to look for to assess if you're burned out or not definitely check out some of the other videos on this channel but I want to share a tool that is easier said than done that can be supportive no matter where you are on that burnout cycle.
Sleep is one of the most healing things that we can do for our minds, bodies, and souls. It's often one of the things that can really go by the wayside when we're burned out. Whether our burnout is coming from caregiving or if it's from our work a lot of times when our plates are more full we sacrifice sleep. Think about what you can control and what is within your power to tinker with to get better sleep. Another strategy is Yoga Nidra if you're trying to sleep and you're not able to go down or you're waking up and having trouble going back down this is a form of non-sleep deep rest that can help your body feel like it's recovered that lost sleep.
Remember, even when burnout feels overwhelming, there are steps you can take to improve your sleep and overall well-being. By implementing practical sleep strategies and incorporating Yoga Nidra into your routine, you can help your body and mind recover from stress and exhaustion.
Sleep is a powerful tool for healing and recovery. By prioritizing it and using techniques like sitting in stillness and Yoga Nidra, you can enhance your rest and resilience, helping you navigate through burnout with greater ease. Sweet dreams and restful nights ahead!
We all have that one friend or family member who's known for giving long, warm hugs—the kind that last a little longer than most. While it might seem like just a quirk, there's actually some science backing up their embrace. According to Burnout: The Secret to Unlocking the Stress Cycle by the Nagatsuki sisters, a 20-second hug can be a powerful tool for combating stress and resetting your body’s natural balance.
When we face stress, our bodies often go into fight, flight, or freeze mode—a natural response designed to protect us from danger. But in our modern lives, these stressors are less about physical threats and more about work deadlines, social pressures, or personal challenges. And while the stress triggers have evolved, our physiological responses haven’t quite caught up. That’s where the long hug comes in.
When you engage in a 20-second or longer hug, several positive changes occur in your body:
Hormonal Shifts: Your body starts to release oxytocin, often referred to as the "love hormone." This chemical not only promotes feelings of bonding and connection but also helps reduce cortisol levels, which are associated with stress.
Lowered Blood Pressure: As you relax into the embrace, your blood pressure begins to drop, which is a sign that your body is moving out of the high-alert state that stress often triggers.
Slowed Heart Rate: Alongside the drop in blood pressure, your heart rate slows down, signaling to your body that it’s safe to exit the fight-or-flight mode.
If you’re feeling overwhelmed or caught in a stress cycle, consider leaning into a hug. It doesn’t have to be forced or awkward—just a genuine, comforting embrace. If this feels accessible and safe for you, it can be a simple yet effective way to help your body return to a more grounded state.
So the next time you find yourself on the receiving end of a long hug, don’t rush it. Embrace the moment—literally—and let it be a tool for resetting your stress response. Your body and mind will thank you for it.
Have you heard of screen apnea? Explore this phenomenon where we unconsciously hold our breath while using digital devices. Screen apnea can lead to increased stress and decreased cognitive function. Keep reading to learn the the importance of mindfulness and breath awareness to mitigate its effects and promote overall well-being.
I invite you to use this blog post to practice conscious breathing while scrolling!
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Check in right now as you're on your screen on your breathing. Odds are very, very high that it's really shallow in your chest. You might even be going in and out through your mouth. And at certain points, you might even be somewhat holding your breath without realizing it. This is a concept called screen apnea.
Linda Stone, a former Microsoft executive, came up with this term. And it relates to this phenomenon of not even noticing when we're in a deep level of focus and concentration or honestly also mindless scrolling on our phones, there's so much stimulation and our focus is so narrow that we tend to really slow down the pace of our breath.
Now there's a lot of different things to think about with this, but you might notice you feel exhausted at the end of a day, even if it wasn't very stressful because of this type of breathing. This turns our nervous systems into more of that fight, flight, freeze mode because when we breathe in this shallow way, we think that we're looking for, our bodies think that we're perceiving a threat or watching or a threat. So check in on your breathing and make sure you take some breaks and follow for more tips.
Explore the hidden costs of burnout in this quick video. Uncover the toll that chronic stress can take on your well-being and productivity. Implementing small changes can lead to significant improvements in your overall satisfaction and effectiveness at work.
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Many of us spend our days in go, go, go, move, move, move, do, do, do mode. And this is a quick check in to get a sense of whether or not you're headed down a path towards burnout.
So the three criteria that were originally part of the 1975 definition of burnout by Herbert Freudenberger are a decreased sense of accomplishment, a depersonalization and emotional exhaustion. Now we know that burnout can come from many areas of life, not just work as it was originally coined to be referencing, but check in on each of these and see how many of them hold true to you.
Do you feel like nothing you do really matters anymore? Do you feel less empathy or sympathy or compassion for the people around you? And do you feel just emotionally exhausted, exhausted most of the time?
If that's the case, I highly recommend that you start to build that self-awareness to take some action to take good care of yourself and get the support that you need.
This is a post I wish I never had the knowledge to be able to write…
When my mother went to the Emergency Room in September of 2019, she was diagnosed with Stage IV non-smokers lung cancer and told she had months to live.
I gleaned many lessons and resources over the next two years of her decline, subsequent death, and while navigating the “after” and grieving process.
I’m publishing this on the 2-year anniversary of her death and am called to briefly share about her before getting into the resources.
Patricia Hayes Axtmayer was one of the kindest humans to walk the earth. She was a nurse, Red Cross Volunteer, blood and platelet donor, mom, mentor, grandmother, sister, lover of libraries, dog rescuer, half marathoner, and the woman who dedicated her days to making other people happy. She lived her 70 years in service to making the world better, even donating her body to medical school for research as a final act of selflessness.
I like to think that her legacy of helping others lives on through my words today, in sharing tools to support others through this incredibly challenging and inevitable part of life.
Whether you’re witnessing someone aging, caring for a person with a terminal illness or at the end of their life, or are in the throes of grieving the death of a loved one, there is something for you in the words to come.
No matter what, I hope you know that you are not alone.
I didn’t really know about this concept before my mom was given a terminal diagnosis. The nutshell definition is: “the distress a person may feel in the days, months or even years before the death of a loved one or other impending loss.”
This article goes more in depth into what anticipatory grief is, how it may feel, and more, as the term transcends the conversation around death and can relate to other potential losses and big changes in life as well.
Recently, it became clear that this feeling hits home for many when a tweet stating “We don’t talk enough about the anticipatory grief of watching your parents age” went viral.
An important note is that there is conflicting data around whether experiencing anticipatory grief can help soften the blow later. I can speak from my own experience to say that it didn’t – and I was surprised and unprepared for that reality.
We were told mom had months to live, but through clinical trials and different chemotherapy regimens, she made it two years. I wrote the bulk of my mother’s eulogy and obituary while she was still alive. We spoke together about death, a future without her in this physical world, and I pre-picked the favors for her memorial mass during what ended up being her final days of life (the favors turned out to be a charming tribute to her love of gardening).
My Type A personality may have subconsciously thought that I could project manage my grief…
While I’m grateful I was able to do these things before (anything that lightens your administrative and cognitive load during those initial weeks of grieving is a huge help), it did nothing to lessen the devastation when she died.
I share this not to be the bearer of doom-and-gloom but because I think it’s important to have realistic expectations - you can prepare all you want but it’s likely you will never be fully ready for what it feels like to experience the loss. That doesn’t mean there is anything wrong with you, it’s just the nature of what comes with something this monumental.
There is a formula that comes from Buddhist tradition that relates well to this:
I was frustrated by the depth of pain I felt because her death was expected. That resistance made my suffering worse. Perhaps with an awareness of this concept, you’ll be less likely to resist your pain even though accepting it is incredibly hard as well.
This is another term many people aren’t familiar with and/or don’t know of as a potential resource.
Here is a good synopsis provided by Cleveland Clinic:
“Palliative care provides symptom relief, comfort and support to people living with serious illnesses like heart disease, cancer or chronic respiratory disease. Its benefits extend to caretakers, too. If you’re living with a life-altering illness, palliative care may be available to improve your health and overall well-being.”
The article goes on to describe different aspects of palliative care including populations that can benefit (anyone with an incurable medical condition of any age/stage), who provides it, and the breadth of support it’s designed to provide.
The hospital my mom received cancer care from had a palliative care division, but I found we really had to advocate to tap into their resources. I won’t go into the politics than can exist between various providers in the healthcare system, and I’m sure it plays out differently depending on where you are/what the medical situation is, but at some larger institutions the left hand may not know what the right is doing.
So, it’s important to know about and that you can ask for this kind of support!
An example of how this can look: my mom often had many side effects from her chemo treatments and we could only cover so much in a short appointment with the oncologist. Working with the palliative team, we could spend more time talking through all areas of my mom’s life, her goals, and how to best support her both physically and mentally (for example in addition to medications they made a referral to the social work team).
The best time to tap into palliative resources is as soon as you can, as it’s designed to accompany you in navigating everything from the financial to emotional components to symptom management.
In fact, “patients who receive palliative care early in their disease course may live longer than if they did not receive palliative care, or received it later in the disease course.” JAMA.
Also, “Recent clinical trials examining the effects of early integration of specialty palliative care show marked improvement in patient satisfaction, mood, quality of life, health care utilization, and overall survival. For example, patients who received early in-home palliative care services in addition to usual care had fewer emergency department visits, hospital admissions, and lower medical costs.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5730447/
My absolute favorite expert on all things palliative medicine is Dr Sunita Puri – her book That Good Night: Life and Medicine in the Eleventh Hour is an exceptional read and really examines the ways the medical system can relieve suffering and become more comfortable with end of life discussions.
I read her book while my mom was alive, and it helped me learn more about how the system should address suffering and whole-person care, which empowered me to advocate for her through the last years of her life.
If you’d like to get a taste of this concept, here is Dr Puri talking about what I hope will be the norm in medicine to help patients and families avoid unnecessary suffering and examine quality of life over quantity of time alive.
My mom had the “gift of the gab” and always asked her providers to share how THEY were doing. Here we’re speaking with her palliative medicine doctor to explore additional symptom support
Some people confuse palliative care and hospice care – these are distinct and if you’re new to end of life conversations, it’s important to clarify what hospice is:
“Like palliative care, hospice provides comprehensive comfort care as well as support for the family, but, in hospice, attempts to cure the person's illness are stopped. Hospice is provided for a person with a terminal illness whose doctor believes he or she has six months or less to live if the illness runs its natural course.”
For example, when my mom was working with the palliative care team, she was still receiving chemotherapy. When it stopped working, she stopped infusions and transitioned fully to hospice care. The oncology team told her she would have 1-2 months left, and she died 29 days later.
Here are some resources that cover the FAQ’s about hospice care, including different types of options for where to receive it, insurance coverage, and more:
https://www.nia.nih.gov/health/frequently-asked-questions-about-hospice-care
https://www.cancer.org/cancer/end-of-life-care/hospice-care/who-provides-hospice-care.html
The great debate for many people is whether to receive inpatient care or to do home hospice care.
It’s a huge question with lots to consider, and much easier to talk through when it’s a hypothetical. Most people end up being in a position to choose when it’s time sensitive because who wants to think about dying?! More on that soon…
We did home hospice, and a few things I think are important to share:
It does NOT include around the clock care – the primary caretaker/family/friends are responsible for the care which can include symptom management, medication management, lifting the person in/out of bed or wheelchair, helping the person to the bathroom / changing diapers, managing procurement of and refilling supplies.
Typically, a hospice nurse comes to provide home visits at a certain cadence depending on the medical details. Our experience was a once/week visit with lovely, kind, and caring nurses. The provider rotated between 3 or so nurses. There are options to pay for private care to get additional care, and some insurance may have benefits to help with the financial side of that, but it’s another logistic to manage.
It was incredibly hard, even with the shifts spread across us 4 children and a few dear family friends. It was also a privilege to care for her, and beyond special to know my mom was where she wanted to be for the end of her life - feeling the good energy and surroundings of a place she lived for 40 years.
This is yet another resource that’s not as well known – perhaps more than all of the others mentioned here so far!
Only a few years ago I had NO idea this was a profession. These beautiful souls focus on helping a dying person and their loved ones before, during and after death.
“An end-of-life doula provides emotional and physical support, education about the dying process, preparation for what’s to come and guidance while you’re grieving.” https://health.clevelandclinic.org/death-doula/
Other terms can be death midwife, end of life doula, end of life coach, or death coach.
I found a local death doula and we met with her once… we thought we had more time, but my mom died only 3 days after our conversation with her.
We sat together on the porch, one of my mom’s favorite places, sipping tea and talking about life. Their conversation went into some philosophical places, and my sister and I saw a reflective side of my mom through witnessing this exchange. My sister even used part of their conversation in her eulogy, and we’re forever grateful that my mom was able to feel supported through this offering.
Here is an example of a well-known death doula, and she has a directory of other providers on her website as well.
Something that can be done with or without death doulas is legacy work.
This can take many forms and people can either be heavily involved or not much involved depending on the project.
I love this description from Penn Medicine: “A challenging diagnosis often leads people to think about their legacy, what and who they will eventually leave behind. People often think of their financial situation, but almost always, there is the shift to our relationships. We think about what people mean to us, what we want to share with them, what we hope for them.
Unfortunately, all too often, these thoughts stay thoughts and aren’t actually put into motion or shared. “Legacy work” is the process of transforming these thoughts into action. It’s the act of sitting down and taking time to purposefully create something for the people you love and care about. It is a way to capture life stories, lessons, sentiments, memories, and traditions. Legacies can convey what we want remaining and future generations to know and understand about our life experiences. They help us to remember and heal as we carry on important traditions.”
That link goes into many examples of what this can look like – which includes capturing family recipes, stories, photos, and voices. This doesn’t have to be something you wait to do until end of life or a terminal diagnosis, and Storyworth is one example of a platform designed to capture stories in a longitudinal way.
If that quote I shared above about aging parents resonated with you, you can explore this for yourself now! Here are more prompts: https://www.legacyproject.org/activities/lifestory.html
I shared my mom’s original prognosis in a new mom Facebook group and asked for ideas to keep her memory alive for my daughter since she was only 3 months old. I was met with such compassion, kindness, and many actionable ideas (which is impressive since mom Facebook groups have a pretty bad reputation!).
One that stood out: “if there’s any habits she has - try to save those! Example: my mom always called and sang me happy birthday. I would give anything to have that recorded somewhere. My birthday has been the hardest part of losing her for that reason.”
Weirdly enough, I had a voicemail saved from 2017 where my mom sang happy birthday to me and left one of her epic signature long-winded ramble-y messages. I listen to it often and it’s quite the balm on harder days.
This is already 4 pages long in MS Word so I better cut myself off soon! Additional resources:
Grief… I could do an entire post on this topic alone, but there are experts out there for that. I’ll share a few things that I found helpful.
A friend, whose sister had died a few years prior, sent me this reddit post. The wave analogy and the reminder that grief is also love was comforting, especially in the initial stage of feeling overcome and weighed down by the intensity of it all.
The ball and box analogy for grief can be a supportive framework for how your feelings may evolve over time. That same friend sent me this podcast episode called “Grateful for Grief” between Anderson Cooper and Stephen Colbert which had me reaching for the tissues.
These are some ways to care for your mind/body through the demands of caretaking and grieving (I personally have used all of these and credit these modalities as being critical to surviving the trauma of it all):
EMDR Therapy- specific modality for working through trauma. This website has a directory for finding practitioners.
Acupuncture – game changer! I worked with Heather at Wander Well Acupuncture here in MA when trying to conceive all the way through to today for general support. You name it, acupuncture can help address it.
Therapy – I was a new mom, partner, friend, sister, daughter, caretaker, business owner, coach, and wellness speaker (and then in the midst of it all, COVID happened!). I needed a place to be able to fall apart. In managing and holding space for others most of each day, this was a sacred place to just be a mess and feel supported by someone else.
https://endwellproject.org/ - their talks and resources are impressive. I’ve found the recordings of talks especially inspirational. From them: “End Well has become the most widely known and respected organization at the intersection of popular culture and healthcare with a focus on end of life, grief, loss, caregiving, and associated health and welfare challenges.” They have a “fresh perspective and commitment to infusing wonder, joy and hope into these conversations while also tackling the tough stuff.”
Family Medical Leave Act in the USA (additional info here): There are eligibility requirements and different policies depending on where you live, but it’s important to know about potential options for leave from your employer if you’re a caretaker. I recently did a wellness workshop on burnout and a participant shared that after the session she realized she was fried and needed to get more support as she cared for her father. She was able to use the policy to go part-time in her work, and is markedly less stressed in managing competing demands and able to be more present with her father. Here are 5 things employers get wrong about caregivers at work. The more we share our struggles, ask for resources and policies, and normalize the human experience, the more likely we can ignite greater change.
Books:
A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death by BJ Miller and Shoshanna Berger. This is a must read for all humans, whether you have a chronic illness, are near end of life, or a regular ol’ 40 year old. It’s a phenomenal resource for ALL parts of preparing for the inevitable end – literally all of the things, from getting affairs in order to what to expect of the mind and the body in its final stages of life.
Being Mortal: Medicine and What Matters in the End by Atul Gawande. Another exceptional read (and dovetails nicely with the book mentioned above by Dr Sunita Puri). My dearest friend has used this as a framework for navigating proactive conversations with her family members to know what everyone’s wishes are in (the hopefully very distant) end.
Grief focused books:
Healing After Loss: Daily Meditations For Working Through Grief by Martha Whitmore Hickman. This is my absolute favorite for myself and that I’ve purchased it for others. If you cringed at the meditation part, it’s not actually meditation. Each calendar page has a quote and a short note that usually strikes a comforting/validating chord.
Full disclaimer- I only partially read these two books that were recommended to me. I tried to read them before my mom died and again in the very initial month or so after, and my grief brain fog didn’t allow much to sink in. It's OK That You're Not OK: Meeting Grief and Loss in a Culture That Doesn't Understand by Megan Devine and also Anxiety: The Missing Stage of Grief: A Revolutionary Approach to Understanding and Healing the Impact of Loss by Claire Bidwell Smith (she also runs grief programs/workshops).
Death is fascinating in that it’s one of the only things that every human has in common – one of the only guarantees – yet one of the most avoided topics.
I hope that if you’re reading this, you and your loved ones are far away from needing the information… and perhaps this can inspire you to have the hard but important conversations when the stakes aren’t as high.
I know that most likely, you’ve read this far for other reasons. My heart is with yours and I’ll share what Susan David says as a reminder of the duality of life: “Life's beauty is inseparable from its fragility.”
Wishing you and yours many more days of beauty and comfort ahead.
Thank you, Mom, for continuing to help others breathe easier. Love you more than the world.
Feeling the jet lag together in Ireland, one of her favorite places in the world, in 2010
