Death Wellness 101: The Most Meaningful Movement Sweeping The Country

16 Sep 2019 - Tracey Wallace

Welcome

I named my dog Idgy after the main character in my wife’s favorite movie: Fried Green Tomatoes. She loves that movie –– and every time she asks to watch it, my response is the same: “It’s just so sad! Can’t we watch something, anything, else? Something not so heavy?”

Most of the time, that argument wins. When it doesn’t, I’m back in the Depression-era watching two friends, Idgie and Ruth, make their way through an abusive marriage and later, an illness that will take (spoiler alert!) Idgie’s life.

In these scenes, when Idgie is sick, she is at home in bed, surrounded by her friends and her family. She is sick, yes. But she is neither lonely nor uncomfortable.

It’s the same way my own grandmother passed –– in our family home surrounded by those who loved her and all of her things. It’s the way my mother has always told me she wants to go:

“Tracey, don’t hook me up any machines. You do right by me! Let me go when I need to go, and let me stay in my house!”

She’s even told me that she’s assigned me as her right of attorney.

“You’re more logical than your brother. You’ll do what needs to be done.”

Those aren’t thoughts I like to think about too often, but they are thoughts that help me understand what one of the more heartbreaking times in my life will look like.

And I’ll be able to do what needs to be done, what my mother wants done, because we’ve talked about it. We’ve talked about it a lot. Over wine, and over dinner. During presidential debates and in whispers while watching movies just like Fried Green Tomatoes.

My family is unique in that way, I’ve learned.

MOST AMERICANS DON’T DIE WHERE THEY WANT

Most Americans do not talk about how they want to die, though in surveys it’s been found that 80% of people would prefer to die at home surrounded by loved ones.

Most Americans won’t get that.

Instead, they will die in a hospital or in hospice or at a nursing home. And their family may or may not be there –– and in a lot of ways, that person themself may or may not have been there for a while.

Medical innovation and interventions can keep us alive by definition for months, years even, though a casual glance by a passerby will have them thinking that person isn’t alive at all.

Decisions around death are hard. They are personal. They are as important as those around birth and marriage. And yet, so few Americans talk about it. And as a result, few of them die like Idgie did, like my grandmother did, or like my mom will.

But the death wellness movement and the “dying well” trend happening across the country is full of people and organizations that want to change that.

DYING WELL, DEATH POSITIVE, AND WHAT’S COMING IN 2020 AND BEYOND

For the first time is what seems like, well, ever, publications from Fast Company to Shape Magazine are writing pieces about death, end of life, grief, and exposing Americans to some of the innovate new ways of thinking in that space.

Today, I’m going to walk through some of those innovations, which are occurring pre-death, post-death, and everywhere in between.

From death doulas to memorial diamonds, morbid curiosity to the realities of after death legal challenges, here is what is changing in the death industry and what you need to know in order to make the right decisions for you and your family sooner rather than later.

1. DEATH OVER DINNER.

Michael Hebb lost his father when he was 14 to Alzheimer’s. In his 30s, two doctors told him that 80% of Americans say that want to die at home, but only 20% do. A light bulb went off immediately as Hebb realized that how we end our lives “was the most important and costly conversation America was not having.”

Today, Death Over Dinner is cited in Sheryl Sandberg’s Option B book. Arianna Huffington credits it for helping her to think about death every day. And there have been more than 100,000 Death Over Dinner event around the world since its inception in 2013.

In fact, the Death Over Dinner website makes it incredibly easily to host one. Just fill out a quick questionnaire about who you will have at the dinner, what prompted the dinner, and choose a few reading materials and you’ll get an email invitation template 90% ready to be sent to your friends.

This email is prescriptive, and on purpose. Death is uncomfortable for most of us to talk about – so it is helpful for guests to prepare by reading, watching, and listening to a variety of assigned materials to get everyone on the same page. Then, there is a pre and post dinner activity, spelled out in the email.

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This kind of routine to the dinner removes unknowns around what will happen there –– leaving tons of room for the unknown is what is said and the vulnerability that is unleashed.

Michael himself has gone on as a partner in a non-profit called Round Glass, which has built out programs like this for all sorts of activities and difficult conversations and topics, including:

Because once you figure out how to talk about death with the world, you can copy and paste a format to bring just about any discussion to where we break bread.

2. DEATH DOULAS.

Doulas have become popular, and perhaps even a mainstay, of at-home births and ceremonies. And now, death doulas are becoming ever-more popular overseers of at-home deaths, as well as resources for those facing an impending death, or who just want to get things in order.

“We work beforehand to help design what those last days will look like and feel like for everybody who’s involved,” says says Henry Fersko-Weiss, author of Caring for the Dying: The Doula Approach to a Meaningful Death, who created the first end-of-life, in-hospice doula program in the United States in 2003. “We also do work we call ‘summing up’ or work on the meaning of the person’s life to help them build a legacy of some kind.”

“I see tremendous value in doing work around the meaning of that person’s life in the lives of those that are left behind—to talk about that person’s legacy, to even create some kind of project that captures in some way the meaning of that person’s life and the impact that they’ve had and what we hope to hold onto and remember.”

This legacy aspect of a death doula is how they help both the dying, but also those who are left grieving in the death’s wake.

One big thing that death doulas have in common with Death Over Dinner and Michael (beyond the industry, of course), is encouraging folks to have living funerals as a way to help with grief and face the reality of your own death.

“I encourage living funerals because they reverse the model of grief Americans are used to. The norm is to wait until after the person dies to say goodbye, put them in an expensive box, and cry as the person is lowered into the ground. But why?,” says Los Angeles–based death doula Jill Schock.

“Why aren’t we taking advantage of the precious time we have with our loved ones before they die? People who take part in living funerals grieve before the death, they get closure and then accept the death. No regrets, nothing left unsaid, and many people are surprised that they have fun while they do it. Sharing stories, laughing, hugging, eating, drinking—this is not your doom and gloom church service kind of funeral.”

The goal here touches on the overall death wellness trend goal in general: to talk about death in the same way we talk about other big life events –– to give it the same consideration, thought, and space, all while removing the stigma –– so each of us can pass the way we want.

“We take so much time planning for the birth of a baby, or a wedding, or a vacation, but there’s very little planning or acknowledgment around death,” says Sarah Chavez, executive director of an organization called The Order of the Good Death and co-founder of Death & the Maiden*, a platform for women to discuss death. *

“To reach the goals you have, or want a certain quality of life throughout the dying process, [you] need to prepare and have conversations around that.”

3. DEATH CAFES.

Death Cafes gather the morbidly curious to discuss their fears about death whether that be their own or someone they love (or just in general!). There are no rules here other than keeping an open mind, and being willing to get vulnerable.

The Death Cafe model was developed by Jon Underwood and Sue Barsky Reid, based on the ideas of Bernard Crettaz. And the objective is “to increase awareness of death with a view to helping people make the most of their (finite) lives.”

There is no staff at The Death Cafe. Instead, it is a social enterprise and idea that allows locals in any area to host a Death Cafe for friends, family, and the morbidly curious in their area. For instance, one of the Austin, Texas area (Eterneva’s headquarters) Death Cafe’s has this listed as their mission:

*“This Death Cafe will allow individuals to openly discuss their thoughts and feelings around death and dying. We will come together to consider each of our opinions and experiences in order to be more open to this natural process and embrace our lives going forward. *

Initially, this will be a cafe style meeting. Each will introduce themselves and, if desired, share their feelings or ideas on the topic. We will let the discussion move freely from the feelings and observations expressed. If the group grows beyond 10-12 people, we will break into smaller groups and follow the same process.”

The Death Cafe website offers materials and steps on how to host your own Death Cafe, including how to be a good facilitator, how to source snacks and beverages, publicizing it and more.

4. GRIEF RETREATS.

Grief retreats are becoming more and more popular with the rise of social media as places to go to disconnect, meet others who in a similar headspace, and begin to build your new normal.

These retreats are for those who are mourning, though there is no time limit on when the initial cause of your mourning began. You can come months after a loss, or years. You can return, or only go once.

Different retreats are built out for different demographics. For instance, there are retreats for children versus adults, couples versus singles, and males versus females –– though there are plenty of options out there that accept all.

Popular TV shows like Dead To Me have seemed to raise awareness for grief retreats in general. Judy and Jen, the show’s two main characters, meet at the fictional Friends of Heaven Grief Retreat in Palm Springs.

While the show puts a satirical spin on grief retreats – a margarita-fueled weekend that mixed group therapy, “Carry On-Oke” and a lot of flirting – the benefits of grief retreats are very real.

“When we’re grieving, we don’t want to be a burden to people and you may not be able to see beyond that moment or circumstance,” says Ty Alexander-William, owner of Destination Heal.

“Destination Heal is a healthy place where you have permission to unload your worries, your trauma and your grief. There is no judgment. This helps you shift your focus and go through your day in a more positive, intentional way.”

At her most recent 5-day retreat in May, 27 women gathered at a resort in the Mexican city of Cancún for five nights of affirmation, meditation and therapy as well as plenty of time to forge friendships. The women are given assignments to work on during the retreat.

“Sometimes we suffer in silence because we don’t have a place to unpack,” says Alexander-Williams. “You’re a mom with kids, you have a job and wear a thousand hats. The retreat gives women space to open their suitcase and unpack everything. Then, go on and live.”

“Some people need hand holding through that trauma, and we provide a brave space with other women who are like them. Knowing that you’re not alone can be the biggest hurdle to get over.”

Here is a quick list of some of the larger grief retreats. You can get a full briefing on each in our grief retreats deep dive.

  1. BREATHING BEYOND GRIEF™.
  2. KRIPALU.
  3. DESTINATION HEAL.
  4. THE STAR FOUNDATION RETREATS.
  5. THE BEREAVEMENT CRUISE.
  6. BARE FEET GRIEF RETREATS.
  7. GRIEF SUPPORT NETWORKS.
  8. SACRED JOURNEY GATHERINGS.
  9. RESPITE RETREAT.
  10. GOLDEN WILLOW RETREATS.
  11. CAMP SOL.
  12. FAITH’S LODGE.
  13. SUNRISE GRIEF RETREATS.
  14. COMFORT ZONE CAMP.
  15. CAMP ERIN.
  16. EXPERIENCE CAMPS.

5. GREEN BURIALS

Green burials aren’t new, though they are beginning to take off in popularity. As a culture moving more and more toward spirituality instead of religion (which dictated burial), as well as global warming becomes more and more evident (and harsh), folks are looking for burial alternatives.

One such organization that has raised massive awareness around this issue is The Order of the Good Death –– which promotes human composting (now legal in Washington state!) and/or the burial of bodies as they once were buried (in a shallow hole in the ground covered by a shroud).

Just how bad are modern burials, you ask? The Order of the Good Death has you covered:

“American funerals are responsible each year for the felling of 30 million board feet of casket wood (some of which comes from tropical hardwoods), 90,000 tons of steel, 1.6 million tons of concrete for burial vaults, and 800,000 gallons of embalming fluid. Even cremation is an environmental horror story, with the incineration process emitting many a noxious substance, including dioxin, hydrochloric acid, sulfur dioxide, and climate-changing carbon dioxide.”

Yikes. Doesn’t sound great, but not all folks are willing to opt for a green burial. Instead, many businesses in the industry are looking to build closed loop systems that would allow for modern burial experiences or practices, while also removing the harm caused to the earth.

Many of those are not ready for mass use yet. So, your best bet if you’re looking for something green at death is opting out of current practices in favor for those of old. The Order of the Good Death recommends conservation burial, which is offered in the following areas:

6. MEMORIAL DIAMONDS.

Memorial diamonds are a new form of diamond created using lab-grown diamond technology, but instead of using generic carbon for the diamond, you use bio carbon (in other words, human carbon).

Cremated ashes contain about 2% carbon, and hair contains a whole lot more. Both ashes and hair can be purified to extract the carbon within them, and then put into a diamond growth machine (typically one called an HPHT machine) to create a custom memorial diamond those grieving can carry with them.

This process is gaining more and more visibility as people opt out of traditional urns or graves as their memorial option. In addition, most cremation jewelry in the industry is trinket-y –– whereas memorial diamonds give you something bright, positive, beautiful, and everlasting to bring with you throughout the next chapter of life.

Beyond the diamond, though, the process takes 7-11 months. During that time, memorial diamond companies provide updates and videos (you can even go to some of their labs!) so you can go on the journey with your loved one, share updates, and exchange stories with friends and family about the person who built such amazing connections and relationships that this is part of their final legacy.

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This is so powerful! Thank you thank you thank you for sharing! We just feel so special getting to go on their journey with you, learn all about Florian and y'all's love. Seeing the diamond come home is one of the best parts! This is the stuff that fuels our souls. Can't wait to see the adventures that await! ❤️ Thank you so much for sharing 🙏 @reneerouleau #rememberremarkably __ The most special of mornings. Nine months after his passing, Florian has returned. He had told me 'I'll find you. I'll always be there.' And now he is here... in the form of a beautiful diamond. Shining bright. Forever. Per his request. 😇❤️ Thank you @eterneva and @adellearcher for this amazing experience. 🙏🏻 Next up: have the diamond placed in a piece of jewelry. #thisisflorian Reposted from @reneerouleau __ __ #gonebutneverforgotten #foreverinourhearts #griefawareness #inlovingmemory #grief #griefsupport #griefjourney #missyoueveryday #lifeafterloss #loveafterloss #loveislove

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7. LEGACY PROJECTS.

Legacy projects come in many different forms but they all have one big goal in common: to honor the life and legacy of the person (or pet!) who passed.

Some folks host annual fundraisers, like The Kardoggians and Chloe’s Fospice Fundraiser in New York City.

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Others write books and work with politicians to have laws changed in the memory of their loved one. Others do multiple 5K walks a year to raise awareness and funds for breast cancer and its prevention.

“To prepare for the seven walks I am undertaking this year, I have been training every day since I lost Karen,” says David Youngerman, “That’s the easy part, frankly. The hard part is raising the money needed to participate in the walks. Each walker is required to raise $2,300 per walk. That means I’m personally required to raise $16,100 to participate in the seven walks.”

Some non-profit organizations like HealGrief help folks put legacy projects into action as well. In particular for college students who are grieving, HealGrief runs a program called Actively Moving Forward which encourages community action and engagement in honor of their loved one.

1 in 3 college students experience a death of a family member or close friend who died within the last 12 months. It’s fair to assume that this is true for all young adults ages 18-25.

Actively Moving Forward from Actively Moving Forward® (AMF) on Vimeo.

8. TRUSTS & WILLS.

The legal ramifications of death are vast –– and can break families apart, or see them go broke. The information around trusts, wills, life insurance, estates, and more is difficult to find at best –– and impossible to understand at worst.

The best advice most folks have is to go and talk to a lawyer –– after the fact. Unfortunately, many people can’t afford this option, especially not knowing what their rights are, what money they have coming –– if any –– and more.

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DO IT FOR ME.⠀⠀⠀⠀⠀⠀⠀⠀⠀ - - - ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Have you elected legal guardians for your kids? It only takes 2 minutes to ensure they will be raised by the exact people you want.

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There are groups and organizations out there, though, working hard to help and change this. One such organization is called Trust & Will. They do trusts, wills, and guardianships pre-need.

Their services include:

And the benefits include:

THE DEATH WELLNESS INFLUENCERS & THOUGHT LEADERS (AKA WHO TO FOLLOW)

No trend or movement can take hold without the grassroots folks making it all happen.

The following people are doing amazing work in the dying well space, growing their own visibility and presence, spreading their message, and helping the world better come to terms with mortality in the face of what seems to be increasing violence, disasters and more.

These people help to ease our morbid curiosity, embrace our vulnerability, better understand grief cycles, and recognize the beauty in change as we all shift to a better dying and grief culture.

1. CAITLIN DOUGHTY.

With 835,000 subscribers on YouTube, 3 New York Times best-selling books, and having founded The Order of the Good Death, Caitlin Doughty is likely the most visible death industry professional –– ever.

Her credentials speak for herself, but to follow her, read her books, and watch her videos is to get wrapped up in her divine acceptance of death, her humor about the topic (and the weirdo ways we’ve come up with the face it), and more.

Her books, videos, and organizations have helped hundreds of thousands –– and entertained even more.

2. MEGAN DEVINE.

Megan Devine is best known for her amazing book titled It’s OK That You’re Not OK, which explains how traditional grief support fails to help those in grief, how the culture perceives grief and loss and what needs to change.

She is also the founder of Refuge in Grief, a grief support resource and online community that serves both grieving people and those looking to better support grieving people via free online resources, paid creative courses, and professional training.

Her quotes on grief are some of the most quoted on the internet, and her book is one of the most recommended. She is active on social platforms, working to share her message, and build community around one of the hardest moments and emotions in any of our lives.

3. ADELLE ARCHER.

Adelle Archer is the co-founder of Eterneva, a memorial diamond company she and her partner started after her close friend and business mentor Tracey passed away. Eterneva was born when Tracey willed some her ashes to Adelle, telling her to do something with them that represented their relationship and what Tracey taught her.

That was in 2017, and since then, Adelle is the only death industry professional to ever be on the cover of a national magazine (Inc’s 30 Under 30 in 2018). She’s also sat and talked with 2 Chainz, been mentioned by the Kardashians, and has even launched the very first memorial diamond lab in Texas –– run by aerospace engineers.

Her goal, and that of Eterneva’s, is to provide a grief-changing journey that encourages folks to talk about the loved one, share stories, create legacy projects, and keep them close.

4. MICHAEL HEBB.

Michael is a Partner at RoundGlass and the Founder of Deathoverdinner.org, Drugsoverdinner.org, EarthtoDinner.org, WomenTeachMen.org, Seder.Today, The Living Wake and the Co-Founder of MuslimNeighbor.com. He is the author of “Let’s Talk About Death Over Dinner.”

He currently serves as a Board Advisor at the Friedman School of Nutrition Science and Policy at Tufts; and in the recent past as Senior Advisor to Summit Series, Theo Chocolate, Learnist, Caffe Vita, CreativeLive, Architecture For Humanity, ONETASTE and Mosaic Voices Foundation.

He is also the founder of Convivium – a creative agency that specializes in the technology of the common table, and the ability to shift culture through the use of thoughtful food and discourse based engagements and happenings. Convivium.co has worked closely with thought/cultural leaders and many foundations/institutions including: The World Economic Forum, Bill and Melinda Gates Foundation, Clinton Global Initiative, X Prize Foundation, FEED Foundation, The Nature Conservancy.

Michael is also the founding Creative Director of The City Arts Festival, the founder of Night School @ The Sorrento Hotel, the co-founder of The City Repair Project, and the founding Creative Director at the Cloud Room. His writings have appeared in GQ, Food and Wine, Food Arts, ARCADE, Seattle Magazine and City Arts.

He has been a featured speaker at Lewis and Clark College, TEDMED, Summit Series, TEDxRainier, and so much else.

Following him and his organizations is a lesson in both living and dying well –– as well as incredible time management skills.

5. RANDY SCHOEDINGER.

Randy Schoedinger is the CEO of Schoedinger Funeral Homes and Cremation Services in Columbus, OH –– largely considered one of the most progressive funeral homes in the United States. Why? Because Randy and his team are embracing newer celebration of life events, turning them into experiences that aren’t dreaded.

They have launched one of the first modern funeral homes in the U.S., a beautiful building that looks more like a country club than a funeral home. In it, light pours in through large windows in every room. Each visitation room has a patio off to the side, where food and drink can be served, and where water and fire fixtures bring the elements into the celebration.

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It is booked consistently, and is a marker of changing attitudes and tastes in funeral services.

6. SHERYL SANDBERG.

Sheryl Sandberg is the COO at Facebook, and has two best selling New York Times books. Her second, Option B, was written after the sudden passing of her husband.

At that time, she began recording her experiences through her Facebook page, and soon wrote the book to talk about the difficult experience and how workplaces, friends and family can better help.

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Happy Father’s Day to all the awesome men out – the dads, grandpas, and stepdads, as well as the uncles, coaches, teachers, neighbors, and friends showing up and showering love on the next generation. ⁣ ⁣ I had always looked forward to celebrating Father’s Day – and it was not until I lost Dave that it even occurred to me that this day could be hard. We’ve been through a few Father’s Days without Dave by now, and while our grief has eased somewhat, it’s still a part of our lives. Today, we will think about Dave and talk about him and be grateful for him, but we will also miss him very much. ⁣ ⁣ To anyone out there having a sad Father’s Day, please know that you’re not alone. And to anyone whose friends or family are feeling down today, check out @OptionB for tips and advice on how to be there for them – today and always. #OptionBThere

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She also has launched the website Option B, which helps with grief of all types –– providing a community for folks to connect, talk, and hopefully reach the coveted post-traumatic growth stage.

7. KANYE WEST.

Kanye West may seem like an out-of-place name on this list, but you’d be wrong. West is bringing his Sunday Service on a tour across the U.S., mostly to cities hit hard by gun violence or domestic terrorismk including Chicago and El Paso.

These services are a new type of approach to spirituality and grief, building community through thoughtful detail, music, and more.

8. HENRY FERSKO-WEISS.

Henry Fersko-Weiss is the president of the International End-of-Life Doula Association. In 2003, Henry created the very first End-of-Life Doula Program in the United States at a hospice in NYC and has built and managed many other programs based on his model.

His work has been featured in the New York Times, at the Global Wellness Summit, and around the world.

DEATH WELLNESS EVENTS YOU DON’T WANT TO MISS

And finally, what is a movement without events and festivals? After all, not all of us can attend a Sunday Service with Kayne.

But the following events we can attend, follow, and support as they encourage us all to talk more about death as a way to live better now and into our final seconds.

1. REIMAGINE END OF LIFE.

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Reimagine End of Life is a community-wide exploration of death and celebration of life through creativity and conversation. Drawing on the arts, spirituality, healthcare, and design, we create weeklong series of events that break down taboos and bring diverse communities together in wonder, preparation, and remembrance.

It is a 10-day festival in San Francisco focusing on death experiences, conversations, and bringing innovators to interested audiences. Last year, the mayor of San Francisco dubbed the week of the festival as End of Life week.

Reimagine was initially prototyped in 2016, inspired by OpenIDEO’s End of Life Challenge as part of an effort to investigate the intersection of art, community, and end of life. It has since then broken into a non-profit organization to run multiple events a year (there will be one in New York City in 2020).

The event will take place all over San Francisco from Oct. 24 to Nov 3, 2019. And if you go give Eterneva a shout. We’ll be there, too, and would love to meet up!

2. ENDWELL.

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EndWell is an end-of-life conference hosted in San Francisco. It’s goal is to create a cultural shift to normalize conversations about our mortality throughout life. Their platform supports new collaborations, systems, protocols, products and fosters new and existing networks of support to make the end of life more human-centered for all. The conference focuses on end of life care, palliative care, hospice care, and innovations across the industry.

The conference was founded by Dr. Shoshana Ungerleider, MD to bring people, across all disciplines, so we can collectively ignite a conversation about how we live and how we die.

3. GLOBAL WELLNESS SUMMIT.

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Put on by the Global Wellness Institute, the Global Wellness Summit explores all aspects of wellness by bringing together leaders and visionaries to positively impact and shape the future of the global wellness industry. The 2019 Summit will take place at the Grand Hyatt Singapore, October 15-17, 2019.

Each year’s Summit agenda is different. The agenda develops over time right up until the Summit and, therefore, features the very issues of the moment, giving the Summit the vibrancy and relevancy that have become its trademark. As invited delegates register, their expertise, interests, and areas of greatest concern are noted. This information, global events, and industry trends are considered as the Summit agenda takes shape.

In 2019, for instance, sustainability is top of mind and the Summit will be using recycled paper for all of its print-offs, as well as focusing on new apps and tools that aid with wellness –– like an app that helps with jetlag, Timeshifter. This year, sounds like there will even be a podcast!

CONCLUSION

As a wellness trend sweeps the nation, a dying well and death positive movement and mindset shift is setting in. To be healthy as long as possible includes up until the moment of death. Medical innovations can keep us breathing, but our mental health is what keeps us alive.

Seeing nature. Being surrounded by friends and family. Resting in the comfort of our own home. These aren’t things most people get in the U.S. when death approaches –– and the survivor’s guilt coupled with the grief loved ones feel after someone passes without having made their wants clear contributes to complicated grief.

It is time for us to step up –– all of us –– and talk about what we want, why it matters, and how we want to remember those who have changed our lives for the better. It’s time to face our own mortality, and that of those we love, so we can be more present now, and better prepared for then.

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