Facing Farewell: Resources for End-of-Life Care and Grief

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.

Anticipatory Grief

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.

Palliative Care

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

Hospice: Inpatient vs. Home Care

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. 

Death Doula

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.

Legacy Work

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.

Resources:

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).

Wrap it up, Aileen!

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

Deconstructing the 12 Stages of Burnout

Understanding the stages of burnout is crucial in order to take proactive steps toward prevention and recovery. Join us on this enlightening journey as we dive into the 12 stages of burnout and empower ourselves to prioritize self-care and wellness.

Auto-generated transcript below. Please excuse any typos!

Which stage are you in and how do you ensure you get out of the cycle, the cycle of burnout? Yes, there are 12 stages it's not just that flat-out passed out in the hospital bed or the subway that is burnout there are 11 stages beforehand.

On this episode will be decoding all of the 12 stages for you giving you the science to avoid the later stages and tips on what to do next.

Stages 1 and 2: Excessive Ambition and Working Harder

Starting with the incomparable and amazing Audrey, thank you Vanessa, and thank you for hosting us as always, Vanessa is incredible at this. So we're going to cover, I'm going to cover stages one and two, my name is Audrey Holst I am the founder of Fortitude and Flow and the perfectionist archetypes which is something I'm going to reference in this first stage which is excessive ambition or the compulsion or need to prove yourself I tend to put this under the hero perfectionist archetype so you may find this in people that are willing to work harder than everybody else they don't complain they make it look easy they tend to take on things that are more than what is realistically reasonable and they don't even think about saying no, they just add stuff to their plate and, I know a lot of folks especially those who are really in caring and ambitious perfect professions just like the laws the lawyers that I work with are in this category.

So we start here and what happens is these folks tend to keep pushing themselves and essentially it ends up just amplifying. So, pushing themselves to work harder this becomes the inability to just turn it off right, work mode becomes the default mode so it can be difficult to prioritize in this place everything. Everything feels urgent it's like everything takes on this umbrella of feeling of urgency. Focus in general goes straight to work head down gets it done and there's a little space for other pursuits so this becomes a situation where people have more on their plate than what their plate actually allows for. Just from that description, we're only in stages one and two you can imagine that this is not a sustainable way to work in the long term.

Stages 3 and 4: Neglecting Personal Needs and Displacing Problems

Aileen take it away with the next stages - thank you so much, Audrey, hello my name is Aileen Axtmayer the founder of Aspire with Aileen, I'm a career coach and a corporate Wellness speaker helping people reduce stress and hopefully recover from burnout or prevent burnout in the first place, so I'm going to be talking about stages three and four which are neglecting personal care and needs as well as displacement of conflict. The displacement of personal or neglecting personal care and needs is sounds pretty self-explanatory but it's an important one to highlight because I think this is where we often will see more of the external signs and symptoms in our colleagues and our employees and potentially ourselves so when we take that prioritization of work like Audrey spoke about and it's that heads-down focus one of those common starting points is oh let me just stay up a little later or let me just grab that take out and then when we start to move towards more of that burnout mode, this becomes a significant and decrease in quality and quantity of sleep maybe not feeding ourselves nutrient-dense food, not moving our bodies so all these basic needs that in isolation we might say oh I didn't really work out that time but when we zoom out we can see a lot of them start to take a toll. 

When I work with my clients in this, I kind of draw a Venn diagram, it's like unaddressed work stress then you have less energy right when you're not managing stress and it's more of the distress and chronic physiological stress versus good stress or eustress when that's not addressed we start to have less energy to give and we have less energy, of course, we don't want to cook, no one goes for kale when they're feeling stressed out and then we get more of you know the comfort foods. That lends to the couch being extra comfortable, and then when we are sucked into that couch we don't want to move our bodies we also impact our sleep with those food and movement choices and then the whole thing perpetuates itself. We'll go to Kate to learn what happens when that cycle begins and or continues and what happens next.  

Stages 5 and 6: Revision of Values and the Growth in Shame

Hi, everybody, I'm Cait Donovan, and I work with organizations to do to reduce systemic burnout so they can keep top talent. I do this through keynotes and workshops.

Number five in the 12 stages of burnout is changing in values and we sort of alluded to this Audrey, alluded to this earlier when she was talking about this inability to turn off. Work is the priority, and work is always the priority nothing else is a priority even if those are not your internal values. This is really tricky so you have to start thinking that those are your values until you stop and really look at it. So by the time you come around to facing burnout, it feels as if it just happened without your permission as if you were not in the driver's seat this whole time and sometimes you're not for a moment. Right?

The red flags to look for here within your organization are inordinate amounts of late or early emails, people emailing all the time at 2 A.M and 10 p.m. This persona where the only thing this person can talk about is work. So they stop talking about their hobbies, they stop talking about their families there's nothing else going on in there. Also a frustration with other people who are not prioritizing work in the same way that they are, so this can create some toxicity between your teammates and between people. This is important to look out for that continues and we move on to stage six. Stage six is the denial of problems and the growth of shame. This is where my good friend, Negative Nancy comes in. I want to apologize to any super nice Nancies that might be out there this one in particular is negative in this stage there is cynicism, sarcasm, explosive reactions, and a sense of disconnect.

This is one of the stages that relates directly to the World Health Organization's definition of burnout. The red flags that I want you to look for here are interpersonal problems, toxic communication patterns, and overall changes in behavior to a more negative focus than was typical for this particular person.Moving on to cycle numbers seven and eight. I would love to leave you with Vanessa Zamy.

Stages 7 and 8: Social Withdrawal and Behavior Changes

Thank you, Cait, so hi there, I'm Vanessa Zamy known as the Business Defibrillator, I help business owners grow their businesses without burnout and I'm going to be connecting with you about stage seven and stage eight of burnout. So perhaps you're you know you're not taking care of your basic needs, your values are misaligned, you're attributing to that Negative Nancy that we just heard about and you're saying to yourself all right there's more, yes, there's more. So, number seven is the social withdrawal that sounds very obvious right, what is social withdrawal? When you withdraw from society, now the thing about it is, that there are subtle differences to this, right, because let's talk about introversion versus extroversion, you may say oh but that person's just an introvert they just prefer to be inward and like I'm just an introvert so that's why I'm not connecting with society. When it comes to burnout, how do you tell the difference? This is where you may either hear yourself or your colleague saying well you know I'm not able to go to that event because I have to work on that project or I can't make it I have this family thing very vague or I can't make it my dog needs help just all vague things but that's not necessarily the issue. The issue happens when you're repeatedly hearing these responses every weekend, every Saturday, every Sunday, every Friday, every Wednesday. It's you, they used to say yes, but now they just always seem to be something in the way.

As a business owner entrepreneur, an example of this would be when you're telling yourself or you're telling your friends oh I have this thing I gotta do for business every single weekend. Every group gathering you have something else you have to do right because here's the thing even introverts interact with people and so if you find yourself without any societal interactions then you are on stage seven.

Now stage eight is the obvious behavior changes. Now what this means is that you just act differently, I mean you literally just act differently not even just in society like a social going to events not going to events but other behavioral changes that were alluded to a little bit earlier as well when Aileen mentioned neglecting personal care and needs. That's one type of behavioral change, right? An example is one of my clients where, you know when we had to take a step back to say okay what is it that makes you feel good about yourself she noted that oh I used to swim when's the last time you swim I asked her oh about a year ago, you see how that, you know, works out there? 

And then today I was actually connected with somebody who has a non-profit right, non-profits are amazing she's had a non-profit for 11 years when I was speaking with her this is a potential client we'll see she becomes a client but essentially when I was connecting with her right I can tell the passion was gone. I can tell that she was no longer feeling passionate about the non-profit and she wasn't able to tell that for herself. And you may be in the stages where you're listening to us here today and you're saying to yourself oh I have been a little bit, oh yeah, yeah there's that thing I haven't been doing in a while hmm right? And so sometimes thinking about what is that passion that you need to reignite within yourself so that you can ensure that you're moving forward with the things that you need to with your values as Kate had mentioned or even with you know personal care or needs that you need to have to happen so that you continue back to the behavior change that actually suits you, not the behavior change that is actually harming you.

Stages 9 and 10: Depersonalization and Emptiness

Moving on to the 12 stages of burnout, next up we have Dr. Sandra. Hi everybody, I'm Dr. Sandra, a clinical psychologist, and personal energy strategist connecting you with those resources you need to make this journey from burnout to sustainable leadership and success whether that is an individual or a group, or an organization. So I'm going to pick up where Vanessa left off and talk a little bit more about what happens when you're now not doing what you need to do for yourself, no longer taking part in things that matter to you so much so that you get to the point that's called depersonalization. When you get to depersonalization I can tell you right now you're pretty deep into burnout, you're way down, you're sliding down that slippery slope. In depersonalization, you're not noticing your body anymore, you're failing to pay attention to your body signals at all. This is the person who goes to get a pair of pants from the closet and thinks they can still wear them but then they put them on and it's like, oh so like I really can't fasten these pants anymore. So they've spent months now eating too much not attending to themselves and now they're and they haven't even noticed that their body's gaining weight. Sometimes they also start to do things because they're sort of beginning to stay move towards numbing, they do things that actually will harm their bodies more than help their body. So this might be a little bit extra drinking, a little bit taking part in things that actually make the situation worse, and eventually end up in stage 10 which is called emptiness. This emptiness is actually a stage where it feels frightening because you now don't feel like you're quite alive anymore. You feel very drained and depleted and it's so scary that sometimes people will actually do things to try to make themselves feel alive. So sometimes that's a lot more sweet food, a lot more sex, a lot more drinking. So when you get to these stages, you can see that you're at the point where you actually really need some professional support. In the depersonalization stage, you're probably seeing some physical symptoms like you might have rashes, you might have pains that aren't going away. And by the time you get to this emptiness, you probably do have some significant physical symptoms. You're going to need a physician and you're going to need somebody who's a burnout expert to help you move through this.

Stages 11 and 12: Depression and Total Burnout Syndrome

And then we're going to switch over now and Dr. Sharon is going to tell you about these last two stages of the system that Freudenberger and North created. Thank you so much. Yes, I am Dr. Sharon Grossman, I am the Burnout Doc and I, as a keynote speaker and coach, work with really, really fried exhausted executives and their companies who want to stop freaking out or checking out and I help them rock out. So what we're going to talk about right now are these last two stages because you want to know how far this can go. Stage 11 is where you get to a point where you're just feeling depressed, and I get this question a lot sometimes people are wondering about the difference between depression and burnout so this is a really important stage for us to understand and to be able to pull apart.

Now I am a trained psychologist and so I've worked with people who have suffered from depression for many years and so if you just look at depression outside of burnout what we see is there's a change in appetite, there's a change in sleep that we tend to isolate ourselves more, we experience more of a sense of worthlessness, more inappropriate guilt over things. You might just have that feeling like you're walking through molasses, everything just takes so much more energy and it's really hard to motivate and get moving. And while that is depression in and of itself, it is actually in the later stages of burnout something that we can see.

So we see sometimes that you have both things happening at the same time. What does this mean for you if you are depressed but you're also having certain symptoms of burnout? Then you might be at this stage 11. The way that we can tell if they're both happening or if it's just depression or just burnout is that with burnout when we step away from the situation, it's easier for us to bounce back. But with depression, that doesn't happen. You can be completely removed from the situation and still feel depressed. So this is a big differentiator. 

Stage 12, this is our final stage. This is what is referred to as total burnout. So this is the end of the spectrum and unfortunately, it is very, very serious. So we need to think about it as such. This is where you no longer care about yourself or others. So in the same way that depression is a stage where you get to a point of hopelessness and oftentimes people who are severely depressed will say, "What's the point?" This is what we see often in that stage 12 of burnout. This is where you've just reached mental and physical collapse. You view your life as meaningless, and it really does require medical attention because oftentimes what we see is people become suicidal, they're at risk for suicide. So this is where if you are thinking about hurting yourself or someone else, then we really do encourage you to call 9-1-1, go to your nearest emergency room, and make sure that you get the help that you need so that you don't do something that is going to hurt yourself.

Um, and you know, I don't want to just leave us on this note because this is a very kind of depressing, speaking of depression, place to end. But really, the reason that we're here today to talk about all these stages is to alert you to how really significant and severe this can be. And now I think we're gonna also share with you what you can do if you are experiencing burnout. So I'm going to hand it back to our host Vanessa. So thank you, Sharon, for that, and thank you to our panelists here.

Questions for the Panel

A few questions have come up, right? So we had, we started out with, as you can, and hopefully everyone listening, right, you can see that yes, there are 12 stages, right? There are different pieces and components where burnout is not just you flat out. It's things little things here and there that happen to your psyche, to your physical way of being, to how you relate to yourself internally and externally, that really add up to eventually getting to that point where you are asking yourself, "What is the point?" And if you know someone who seems like they might be approaching that or if you yourself are approaching that, I hope you can see that there's a way out of it, right? There's not, you don't have to continue on the path towards all the 12 stages, and even if you end up at the 12th stage, you can still find your way out.

A question that I have here is, so Audrey, I mentioned something about, you know, excessive ambition and compulsion, and you know, people said they're pushing themselves to work harder and not being able to turn off. What are some tips that you may have or anyone on the panel may have for how people can effectively say no?

Yeah, it's an excellent question, and I think also folks should reference the panel that we did last month because there are some really good tips and tricks. And I mean tips and tricks, to put it lightly, right? This is something that you can't just take one trick and all of a sudden you're like, "Yeah, cured!" You know, like this is something that is an embodiment in the nervous system. I think that maybe as you can listen to each of the stages going deeper, you're realizing that it's not just like a mental thing, it's also a body thing. Once the body starts getting deeper and deeper into this, it becomes harder and harder to pull it out on the other side.

So, creating awareness is the biggest thing here. If you have no idea that you even have the option to say no or that you are pushing past a limit, you have to start recognizing limits, you have to start recognizing needs, you have to start recognizing the fact that, "Oh, what does it mean to be taking on too much?" or "What does it mean to be having compulsive ambition?" These are things that require some awareness before you can actually address them. So, just starting to create some noticing. When I use the framework, the forward student flow framework, it's noticed that is number one because you can't create change until you've actually paid attention. I'm sure other people have plenty of things to say about this topic.

Yes, love it. Anyone else on the panel would like to add on tips on how to, on that person who's facing that perfectionism, in a sense, right? I think that's the perfectionist archetype is what Audrey had alluded to. Right ways that they can, you know, embrace because perfectionism is not necessarily bad. It's not horrible, you know, it's just more so, you know, it can be harmful in this scenario, but it's not terrible, no. If there's a neurosurgeon that's operating on my brain, like please be a perfectionist. So, there are places where perfectionism is highly necessary. The question becomes, is the place where you're applying it right now highly necessary? Is it really that highly necessary?

But for me, before we get to saying no effectively, we have to break down why we avoid saying no in the first place. If, for instance, really commonly with clients, I hear that they're not saying no to people because they don't want to disappoint anyone. If you have a major fear of disappointing people, I can give you all sorts of scripts for how to say no to things, but you're not going to use them. So, I think what we need to do before we start saying no, before we give people the words to say, is to pull apart where is this striving coming from, where is this really happening in your body and in your persona, what's going on here? So that we can unwind it and create space for you to be able to not even then get to having to say no because you're not saying yes in the first place, right?

So, I like this idea of internal boundaries, where we're looking at, especially in my work, we're looking at resentment, seeing where it's built up, and then pulling ourselves out of those situations that aren't even requiring or asking for our help. That's not stating a no boundary, it's just not over participating in things that aren't asking for you. Foreign good point.

Yes, so next question for the crowd here while we wrap up. So, we talked about a few things that we came up with when, you know, Aileen or even when I was mentioning just the idea that you then reach a stage where you're not doing things as you used to do. So, whether that be neglecting personal care overall or maybe not eating well or at all, or neglecting things that you like to do, whether it is swimming or even just things that you're passionate about. So, any advice here from the panel on how does one bring those things back? Right, let's say someone is listening and they're at that place where they have stopped doing stuff and now they're in this kind of new routine that is, you know, it is a routine, right? It's not a helpful routine, but it is a routine. Any tips from anyone here on the panel on how can they bring that back?

Yes, Sharon. Well, I think these two questions actually have something in common. We are thinking about, you know, even in the way that we're asking these questions, we're thinking about our behaviors. How do we do something different from how we're doing it? And I think that we often get into trouble when we're just focused on the behavior because the reason that we've been doing it this old way all along is because there's some underlying belief that we hold. And that may be something completely out of our awareness. It might be a subconscious belief that says you don't deserve to feel good or you aren't a good person or if you don't say yes to other people, they won't like you. So, we have all these reasons for doing things the way that we do them. And so, yes, we can talk about how to change our behaviors. But ultimately, I think if we don't really focus on changing the beliefs that are underlying, these are the things that drive our behaviors. So, we kind of are going against the stream. That would be my first stage, is to just hope you change the way that you think about things, the way that you believe about yourself and other people. That's leading you to do things the way that you're doing them. Once we clean that up, then changing the behavior gets a lot easier because we all know what we really need to do. We're just not doing it. That mindset, that mindset indeed.

Right, and I know we each have our own different fields. Some of us do corporate leadership, others…

I do the business side. Some of us do the early life transition side and all these different pieces. But the common thread is the mindset, right? Getting into the mind and beliefs. Did anyone else have anything they want to add? Oh, yes, Dr. Sandra. So yeah, and I was, um, I had the same thought as Sharon that there's a connection between this difficulty turning yourself off, always being focused on work and self-care. And part of that is sometimes we're in an environment, again with the beliefs, where it is suggested that as a woman, as a person of color, as this or that, you're not really allowed to thrive in this environment. Like you're gonna have to go the extra mile, you have to do more, you have to do twice as much to get half as far. So there's a belief there, and there's also a legacy, and they are also often realities in your environment that do hold you back because the beliefs are not always in you, they're in somebody else's head about you, and that person makes decisions. So you may be fighting something that you don't really have control over. So beginning to help you sift that out and see whether or not you're fighting you and shifting beliefs you can shift or you're fighting some other belief that outside of you is an important distinction as well.

And I think very simply we can all end our day by saying where that I take care of me during this day. Just at the end of your day, where did I take care of me during this day? And if there is no place that you took care of you, then we definitely want to begin to help you do at least one thing every day where you say you can end that day and say, "I took care of me today." I was going to add to that too for organizations, people who are trying to help their employees not burn out. Now, listening for some of the signs and symptoms that we've shared can be really helpful to assess the culture. But really being intentional about the way you're connecting to and learning from your employees about how you're creating opportunities for them to take care of themselves or not, how you're managing expectations of being on all the time and responding to things in a timely manner so that, like Dr. Saunders shared, the other side of the coin for those listening who are trying to create healthier cultures at organizations, what can you do to contribute to a healthier environment that helps get rid of that dialogue that you have to, that the only way to succeed and to be a good team player is to sacrifice yourself?

Yeah, and on that piece of team, I'm curious Vanessa, since teams like it's your specialty, um, what like what would you suggest in terms of that teamwork aspect when it comes to burnout? Because it's a huge piece. Like a lot of this is we're talking about that environment, the individual, but that team piece is like a whole other element. That is such a great point, and it starts with the leader. It starts with the leader of that team because at the end of the day, the team members are following what the leader is doing. They're following what they see or they think can be is approved by the leader, what they see or think the leader is doing. And let's say you are the leader, what you're saying to yourself, you know what? Perhaps I work the weekend, but I don't expect my team to work the weekend. Then you've got to say that because guess what? They're going to do, they don't work the weekend. Oh well, this person, the most weekends. I'm worth the weekend too. And like that way

I can get promoted, right? And being acknowledging that as the leader, you do have the power, you have the influence to guide your team in direction so that they can understand that you know what, one of the values that we have is that you're able to work on your own time or one of the values we have is that you only work nine to five or that if you need to put in extra hours, you put in extra hours. If that's your team culture, do you live your life, but having those boundaries, having those expectations, and making them known and communicating those effectively is what will help your team to align with each other even stronger.

Yes, yes indeed. Great question, Audrey. Um, yes, so we are running a few minutes left, so we're gonna wrap up here and I'll pass it off to Audrey as well to close us out. And for those who have any questions, if you're listening to the replay or watching us during the replay, then I encourage you to react and also, you can also comment with your questions. We will be keeping an eye on the comments as well too the next couple of days, so you're welcome to comment if you have any questions come up or reach out to us individually.

Audrey: Yeah, so this is something else that you can if you're watching the replay, you can click on right away is you've had us, you've heard us talk a little bit about, you know, what is the sort of existing paradigm around burnout, but you can also hear that there have been some updates to this model in a lot of ways and that the work culture has changed and work culture is changing. It's like a living breathing entity. And so everybody in here has been working within this living breathing entity of Team space, individual space, organizational space, working with folks to prevent burnout, to talk about burnout, to educate about burnout, and to help people recover from burnout. So this is a group you can bring us into your organization, we can talk about this, we can educate on this, and you can hear how everybody has their own synergy here, but everybody has individual expertise. So there is a link that's going to be dropped in the chat where you can click on it and you can ask us specifically to come talk to your crew or that you can even ask us questions that you want to have us answer in future panels, discussions like this on LinkedIn or maybe there's somebody that you know whose team might really need us. Well, keep it anonymous, but you know, this is something that you can start to recommend, let people know that this is happening, right? That this is available because this is certainly, as you can see, burnout doesn't just magically go away by itself. It's something that needs some sort of outside intervention or education or awareness in order to create a shift. So you can check out the form, fill it out, and even if you're watching the replay, this is going to be available for you at any point, so save that bookmark, that link. So when you're sitting around starting to remember some of the stuff we talked about today, okay, there is, there are people and there are resources available.

Fantastic. Well, this was the burnout panel on decoding the 12 stages of burnout, and the link is in your comments. Join us in 2023 in the new year as we tackle another topic to get you through and on the other side of burnout. Ciao.

Practicing Yoga at Home? Try these Simple Neck Streches

April was Stress Awareness month, and May is Mental Health Awareness month. They're beyond connected, of course, and being in a chronically stressed state has a negative impact on our mental health.

The first step to addressing both of these is awareness- when we understand how we're feeling (mind and body) and what our stressors are, we can then take action.

One element we can become more aware of is where we hold stress in our physical bodies. For many, it's often in our jaw, neck, and upper back.

My invitation for you is to
1) take a few breaths and a moment for yourself today... where do you notice stress manifesting in your body?
2) Try this release and see how you feel!

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If you’re curious about learning more of the science behind how our bodies hold onto our emotions, there is a fascinating book called The Body Keeps the Score. It’s certainly not a light read, but can help illuminate how these two things are connected and what we can do with our bodies to help move our emotions.

In the book Burnout: The Secret to Unlocking the Stress Cycle, the Nagoski sisters walk through this concept in detail as well. It’s a favorite book of mine and I adore their voices and the very simple yet evidence-based and practical strategies they share to release phsyiological stress from our bodies, freeing our minds in the process. The strategies are summarized in the link above.

They highlight movement as one of the most efficient and effective ways to do just this - so that’s my final nudge for you to explore this stretch and any other form of movement that feels good to you!

Feeling Some Burnout? Try this Breathwork as a Morning Meditation

This breathing exercise has been a favorite of mine ever since Boston yoga instructor David Magone first introduced me to it back in 2012… a casual 10 years ago 😊

There are variations for the flow and hand positions, but the gist is the same: alternating breathing out of one nostril at a time.

I have found that even when I’m teaching it, I feel calmer after only a few cycles, so I’m not surprised that there is research to support the benefits this has on our nervous systems (check out PubMed to see some).

I find when I’m teaching corporate wellness workshops to help address employee burnout, breathing exercises seem to be the most popular and can sometimes be less intimidating when people are coming to the session without an existing mindfulness practice.

Breathwork IS a form of meditation!

When people experience the physiological benefits that come with the specific breathing practice at hand, those positive feelings and impact can motivate them to come back and do more.

As with any habit, feeling that reward makes it much more likely to be something you repeat!

If you’d like to pair this with music, here’s a link to a meditation music playlist I created.

Anyone else a Nadi Shodhana fan?

Or if you’ve never done it, let me know how it feels if you try it out!

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5 Things You Need To Do When Planning Your Corporate Wellness Programs

If you work in HR or are on the wellness committee at your organization, how do you approach planning your wellness offerings?

After partnering with a wide range of players in this space, from startups with small budgets to global companies with more resources at their fingertips, I’ve found the following best practices help employees feel seen and supported by these programs:

1) Poll your people!

It may sound obvious, but a lot of times this doesn’t happen due to time/resource constraints. Even if you can’t collate info from a huge group, ensuring the opinions are heard from a few disparate teams can make a huge difference.

Aside from more formalized polling, utilizing mindful listening during all times of the year (vs. just during the planning period) can help flesh out some recurring themes of what employees are struggling with and where they could use more support.

2) Anticipate challenging times

Of course, we can never anticipate everything. But, if there is a period with greater challenges coming (examples: an annual “busy” season, a major organizational change) and offer programs beforehand to help employees move into that time feeling more refreshed vs already fried.

Not possible? Providing wellness tools after the fact and honoring the struggle of that specific season can increase engagement. Sessions offered when employees are “in it” may have less participation.

3) Accomodate time zones and learning styles

Offer the same program multiple times to enable multiple time zones to be accommodated. This simple strategy is powerful – honoring the times that work for teams in other countries can help them feel valued.

Bonus- these tend to create smaller groups in each session, which lends itself to greater participation because the group feels more intimate.

Not a global company? Noting the needs of different learning styles in this same way can have the same impact (more breakout rooms if there are more introverts in the session, for example).

4) Take a holistic approach

Of course this all depends on your budget, but if possible, looking at well-being from a holistic and whole-person centered approach tends to help more employees feel catered to in the offerings. In the book Burnout by Amelia and Emily Nagoski, they say “wellness is a state of action” and I adore this mindset.

Since there is no single answer to a healthier mind and body, consider thinking about all of the different pillars of health and creating programs to support each – mental, physical, emotional, financial, spiritual. Some people may have their movement down and not want any step challenges or office yoga, while others may benefit from those nudges to be more physically active.

One company I’ve partnered with for 5 years now breaks each quarter into a wellness theme and then creates programming that aligns with those themes. We typically meet each January and based on those, I create workshops/events that touch on the topics they’ve deemed most pressing for their people.

5) Quality over quantity

Short can be sweet – while there is power in longer programming, attention spans have dwindled in the last few years. Consider breaking a big topic down into micro-sessions to allow for easier scheduling and digestion of information.

Seasoned planning professionals, what have I left out?

If you’re an employee participating in wellness workshops, what is something your employer does that makes you feel supported?

As always, I’m here for complimentary consultations if you’d like to discuss your employee wellness needs. Happy planning!

Simple Stress Relieving Strategies You Can Do At Home

It’s only one month into a global pandemic, and COVID-19 has already made it a challenging time for all of us in countless ways.

Here are some resources for ideas on how you can continue to support your mind, body, and spirit.

Mind:

Sitting in stillness can be challenging even in normal times, so here are ideas for more active forms of meditation:

• Color: grab some colored pencils and an adult coloring book and get to it! Coloring mandalas in particular has been proven to help reduce anxiety levels.

• Walk: bonus points if you have access to nature as it’s proven to reduce stress (grass patches + trees count, city dwellers!). Make it a moving meditation: pay attention to everything around you and try to use as many of your senses as possible: what you see, smell, the feel of the fresh air and the earth under each step.

• Breathe: try alternate nostril breathing and/or box breathing in particular. They both require more concentration, which can be a wonderful way for your mind to have to keep refocusing on what you want it to.

Body:

You’ve likely seen that there are TONS of instructors local to you offering streaming classes now. If you don’t have an instructor you like, here are some more “corporate” options!

• Peloton is offering a full 90 days of their app for free – no bike or treadmill needed. I adore Aditi’s yoga classes.

• The Down Dog app has free barre, HIIT, and yoga as well and can also be viewed from a computer. They’re extending the free access for everyone until April and longer if you’re a student or teacher!  

• If you want to wind down for sleep, or just for the sake your stress levels, here is my guide to simple yoga poses you can do to calm your nervous system and release tension. If you can only have capacity to do just one, pick legs up the wall without a doubt!

Soul:

For some people, this time is creating a bit more space to do a bit of big picture reflection.

• As a reminder I always offer complimentary 30-minute phone consultations on everything from work to wellness: if you’d like a listening ear, you can reach out to schedule.

• If you’re in the process of navigating a change in your work, I recently ran a virtual workshop with GA Boston on Negotiation and the Interview: Exploring Fit & Landing the Job. You can access the recording for free there!

The outpouring of resources out there (and here!) can be very inspiring… but also very overwhelming.

Take what works for you and leave the rest.

Sending all of my best positive and grounding energy your way.