Genetic testing for Alzheimer’s is on the rise. But what happens when the results are dire?

— Few support services available to help people deal with the implications of at-home testing

Lexi Nelson talks to her mother Wendy at their home in Foxborough, Mass., March 21, 2023. Wendy’s mother died from Alzheimer’s disease, her father suffers from it, and genetic tests show that Wendy and her three daughters each carry a gene variant indicating an increased risk.

Wendy Nelson watched her mother slowly die of Alzheimer’s disease, unable to move or swallow at the end.

“All her pleasures of life were gone,” Nelson said.

Grief-stricken, terrified of facing the same death, Nelson ordered 23andMe DNA test kits for Christmas 2020 for herself and three adult daughters.

A Boston-based biotech executive who is now 52, Nelson hoped the kits would provide reassurance. They delivered the worst possible result. Nelson has two copies of the APOE4 gene variant that increases the risk of Alzheimer’s, which means her risk of developing the disease is eight-to-12 times higher than people with the most common version of APOE.

“It totally backfired,” she said.

Millions of people are expected to test for Alzheimer’s in the coming years — some like Nelson, with at-home test kits, others at labs, as new drugs for people with early Alzheimer’s from partners Eisai Co Ltd and Biogen and Eli Lilly usher in sweeping change in approaches to treatment of the disease.

Testing for the APOE4 gene variant among Americans being treated for Alzheimer’s has more than doubled from a year ago, an exclusive analysis of medical records for Reuters by health data firm Truveta found. The increase was driven by the new treatments that promise to slow the progression of the disease, but also carry risks, especially for people like Nelson carrying two copies of APOE4.

Yet few support services are available to help people deal with the implications of APOE4 testing, according to interviews with more than a dozen neurologists and genetic counselors. Alzheimer’s patients and caregivers face a shortage of genetic counselors to explain the tests and help them navigate the psychological, medical, financial and legal consequences.

Eisai and Biogen’s Leqembi, which arrived on the market in January, costs $26,500 US a year and is not covered by U.S. Medicare outside of clinical trials. Medicare has said it will expand coverage if the drug is granted full U.S. approval, expected this summer.

‘Existential dread’

“When you learn that information, you’re potentially learning information about your siblings, about your children,” said Emily Largent, a bioethicist and health policy expert at the University of Pennsylvania Perelman School of Medicine.

“People describe feeling existential dread.”

As a scientist, Nelson understood intellectually what her APOE4 results meant, but they created emotional havoc for her family. She had inherited one copy of APOE4 from her mother and the other from her father, who was showing no symptoms of Alzheimer’s at the time.

When her father’s memory began to fail a year later, one of her two sisters doubted it could be Alzheimer’s, Nelson said. Nelson knew he had to have the disease, because of her genetic test results.

The tests also showed that each of Nelson’s three adult daughters had one copy of APOE4, which triples or quadruples the risk of developing the disease — confronting them with their own Alzheimer’s risks along with their mother’s.

Nelson’s daughter, Lindsey, 22, and a fourth year nursing student at New York University, said she was traumatized when, even before testing, Nelson talked about exploring assisted suicide rather than suffer her mother’s fate.

“I would yell at her, cover my ears and run away,” Lindsey said. “There are many complicated emotions involved.”

Nelson’s eldest daughter, Lexi, 24, who works in data analytics, turned to research showing that lifestyle changes such as weight lifting can improve cognitive function. “I’ve tried really hard to improve my sleep, I’m exercising a lot,” she said.

Her youngest, Pam, 20, a sophomore biology major at UCLA, said she takes comfort in knowing that her mother’s result is not a diagnosis. “It’s just a risk factor, and there are many other factors that influence what will happen.”

Leqembi is not suitable for Nelson, who is not symptomatic. Even if she were eligible, she said she is not a fan because of the risk of brain swelling, which is higher for people with two copies of APOE4.

Nelson is pinning her hopes on an experimental pill from Alzheon, which is being tested in people with early Alzheimer’s who have two copies of APOE4.

Vials and packing are seen for a medication.
This Dec. 21, 2022 image provided by Eisai in January 2023, shows vials and packaging for their medication Leqembi. Leqembi is not suitable for Nelson, who is not symptomatic.

She is working her way through a bucket list of trips. In February, she climbed Mt. Kilimanjaro to raise money for a cancer charity, and she would like to visit Patagonia, the Greek Islands, South Africa, possibly Antarctica.

If treatment fails, she said she has her “exit plan”: legal euthanasia through a clinic in Switzerland. “I do not want to live the way my mom had to live her last five years of life. She was miserable,” she said.

The testing revolution

Until recently, most doctors tended not to order genetic tests to determine Alzheimer’s risk, because there were no effective treatments to slow or prevent the disease.

That changed with Leqembi, which was shown to reduce the rate of cognitive decline by close to 30 per cent in patients with mild Alzheimer’s. Eli Lilly’s donanemab is in clinical trials with results expected by June.

Both drugs remove the buildup in the brain of amyloid plaques associated with Alzheimer’s, and are viewed as a first step towards even more effective treatments. Both can cause swelling and microbleeds in the brain. U.S. regulators recommend genetic testing before starting treatment with Leqembi.

“With this drug, it behooves us to check,” said Dr. Sarah Kremen, a neurologist at Cedars-Sinai in Los Angeles.

In the four months ahead of U.S. approval of Leqembi in January, APOE4 testing among people over 55 who visited a doctor within the last 30 days increased 125 per cent. From September 2022 to January 2023, the rate averaged 1.4 tests per 100,000 patients, compared with 0.6 tests per 100,000 patients in the same period a year earlier, the analysis by Seattle-based Truveta found.

The analysis was based on a review of medical records from 7.9 million adults at 28 major U.S. hospital systems. It does not include at-home consumer tests.

The National Institutes of Health estimates up to 25 per cent of people in the United States have one copy of APOE4 and up to five per cent have two copies. Yet there is a shortage of genetic counselors to help families deal with the implications of having two copies of APOE4.

A 2018 study in the European Journal of Human Genetics found the U.S. had just one trained genetic counselor per 82,000 people. The United Kingdom had 1 per 193,500.

Banner Alzheimer’s Institute in Phoenix, which is testing Lilly’s donanemab, is researching an interactive online platform to deliver APOE results to volunteers being screened for enrollment in the trial.

“We needed a scalable way to warn people about the potential benefits and risks of genetic disclosure,” said Dr. Eric Reiman, Banner’s director.

Better not to know?

While the U.S. Genetic Information Nondiscrimination Act (GINA) bans discrimination in employment and health insurance, it does not cover long-term care and disability and life insurance.

Some members of families with increased genetic risk of Alzheimer’s say it might be better not to know at all.

Dovie Bryant, 77, who is taking part in the Lilly trial, lost her mother to Alzheimer’s in 2012.

When she shared with her five siblings that she had one copy of the APOE4 variant, none wanted to find out their own status.

Her brother Jim Painter, 71, said he feared testing could make it harder to pass a health screening to move into a retirement community that offers increasing levels of care as a person ages.

“That might be a red flag,” Painter said.

Complete Article HERE!

The uphill battle for LGBTQ people after death

The Louisiana LGBTQ+ End of Life Guide. Though it was made with Louisiana’s laws in mind, creators of the guide are hoping to adapt and expand it to every state in the country.

By Katy Reckdahl and Christiana Botic

Three years ago, Robert Turner, a retired computer analyst in New Orleans, was diagnosed with Parkinson’s disease. So far, Turner, 63, only feels slightly stiff and a bit slower in his motion. “I tell my doctor I’m on the 20-year plan of surviving this,” he said.

Still, because Parkinson’s is progressive, his sister, a geriatric nurse, imagines the worst.

So Turner spent part of last week leafing through the 35-page Louisiana LGBTQ+ End of Life Guide, created in New Orleans about a year ago. It’s thought to be the first of its kind in the United States.

He’s been focused mainly on the guide’s first of four sections, called “When You’re Well,” which deals with Louisiana law and death planning, advance directives and wills. “I’m not ruling out a future husband, but there’s not one currently,” he said, as he outlined where his possessions will go and who can make funeral arrangements for him.

Robert Turner at home in New Orleans. He has Parkinson’s and is utilizing the Louisiana LGBTQ+ End of Life Guide.

Turner understands the stress of not having the proper legal framework in place when a loved one passes. “It’s just one of those things that we all put off and we all need to do,” Turner said. “My first husband died of AIDS in the early ’90s. We had scheduled a lawyer to come visit him in the hospital the next day, and he died that night.”

“Louis was really my first boyfriend, my first partner, my first husband, even though gay marriage was, of course, not legal in Louisiana then,” Turner said. “I didn’t have anything legal to show for his estate that he was my partner.”

A handmade magnolia wood urn holds the remains of Turner’s late husband, Louis Magee, who died at 38.
Turner looks at a photo of him and Louis.

The guide is the brainchild of Ezra Salter, 31, a funeral director in suburban New Orleans.

The onus to create this comprehensive guide came after Salter started dating their partner, Keira, a transgender woman. Salter, who identifies as nonbinary, was shocked at the disapproval that came from family. Salter feared what might happen if one of them died but couldn’t find a centralized, readily accessible resource to help them navigate the issue.

Neither of the pair have changed their names legally, and though relationships with family are improving, the tensions have remained. Salter’s parents haven’t met Keira during the 10 years they have been together. Some members of Keira’s family still refer to her by the name she was given at birth, known as a “deadname.”

Nonbinary funeral director Ezra Salter, who created the Louisiana LGBTQ+ End of Life Guide, at Metairie Cemetery.
Salter walks through Metairie Cemetery.
Salter holds Keira’s hand. The married couple have been together for 10 years.

In collaboration with several experts, Salter published the Louisiana LGBTQ+ End of Life Guide in 2022.

Salter said they frequently hear from guide users that “‘I never thought of this, I thought that power of attorney was enough,’ and not fully understanding the depth of what they need to protect themselves.”

“Getting documents in line prevents some heartaches,” Salter said of planning for death for unmarried couples in the LGBTQ+ community. “It’s difficult to see someone struggle with the idea that the husband who they used to sleep next to every night is sitting dead in a cooler because you can’t cremate them earlier unless you have this magic piece of paper.”

The family tension Salter speaks of is a common experience among members of the queer community. It makes the guide a necessity.

Salter and Keira, left, watch television at their home.

Nicholas Hite, of the Hite Law Group in New Orleans, founded his own law group in 2013 and focuses on LGBTQ+ representation. “Part of preparing, legally, for death is understanding that it’s most often not a lightning-bolt moment, where you’re alive one minute and dead the next, because of medical care and the nature of modern life.”

“For queer folks, your biological family — the people who are legally the next in line to make decisions — are oftentimes the last people that you want making your decisions,” he said. “So you need legal paperwork allowing your most closely held individuals — who aren’t necessarily married to you or related by blood — to be in the hospital and at the funeral home with you and on your behalf.”

Lawyer Nicholas Hite at his office in New Orleans.

Three years ago, because Ellen Stultz lacked such paperwork, she spent three months trying to claim the body of her close friend Oscar White, 62, who died without a partner or known family. “The situation was hard for me, still is really hard for me,” said Stultz, who has fond memories of French Quarter strolls and whiled-away afternoons at White’s apartment with his little family of adopted stray dogs.

After two months, she started to worry that White would be buried in an unmarked grave. She called the morgue every day, then connected with Salter through mutual friends. Within a week, she’d received a box in the mail containing White’s ashes.

Ellen Stultz saved the USPS box that conveyed the ashes of her friend Oscar White.

“His death was so traumatic,” Stultz said. “Yes, this is something that happened, but it seems like it doesn’t have to.”

Stultz did all she could within the system to claim White’s remains. Though no one else was requesting them, the state would not release the remains because she was not a blood relative. “When I first called the morgue, they were like, ‘Wait and see if any next of kin comes to claim his body.’ And at this point, he’d already been there a month. They didn’t really have much advice except just, ‘Keep calling,’” Stultz said. “Once I got Ezra involved, having someone to advocate for me, that’s all it took.”

Stultz holds White’s ashes.
Stultz holds photos of White and their group of friends in New Orleans.

For gender-diverse people, death arrangements have added complications, said Salter, who often hears the same questions again and again. “Who’s going to handle my body when I die, and how can I make sure that they use the right name and the right pronoun?”

“As I became trained in funeral service, I asked specific questions a lot, to every professional I met,” Salter said. “I’d raise a lot of hypothetical questions —“I’m asking for a friend.” I made it my business to get these answers because it was not clear anywhere online. I kept what I call a ‘chaotic Google Doc’ of everything I knew about funeral services.”

“I put my own life and, sort of, my own transition on hold to gain knowledge and work in a system, so that I can then go help people outside of the system who still need to interact with this institution and, you know, bridge the gap,” Salter said of working in the corporate funeral industry.

Salter holds a casket key they use at the funeral home where they work.
Makeup used to cosmeticize the dead.
The parlor room at Salter’s funeral home.

Hospital policies rarely deal with what gender (or nongender) should be assigned on death certificates, said Dietz, a contributor to the Louisiana guide who works as an advocate for transgender health care. (Dietz uses a mononym, without a surname.)

Most often, gender determination is made by the doctor signing the death certificate. But gender markers from medical records can be unreliable, since transgender people who still need prostate exams or Pap smears — considered “gender-specific care,” may retain their birth gender, even if they change gender on driver’s licenses, Dietz said.

“Oftentimes, life feels so overwhelming to LGBTQ+ people, depending on your layers of intersecting identities that are oppressed. So it can be really hard to prepare for death when we’re trying so hard to live,” Dietz said.

Because laws and institutional policies vary greatly between states, the creators of the Louisiana guide hope to create similar guides for every state, through a partnership with the national death-care advocacy group the Order of the Good Death.

Dietz, a contributor to the Louisiana LGBTQ+ End of Life Guide, at home in New Orleans.

In Louisiana, all powers of attorney expire at the time of death, said Liz Dunnebacke, who helped publish the guide through her New Orleans nonprofit, Wake, which provides death-care information and resources.

So even if someone has prearranged their own funeral, their next of kin can legally override those plans. “Your estranged mother can blow in 30 years later, order a full Catholic service with rites and exclude your chosen family from the ceremony,” Dunnebacke said.

That nightmare can be averted through the Funeral and Disposition of Remains Directive, a newly minted, two-page form. “The legal code existed, but no document. So we created one, which we now make available,” Dunnebacke said.

The directive, once notarized, identifies who will make decisions about physical remains and funeral ceremonies. It is an essential step, both legally and emotionally, Hite said.

“You know, many of us spend our entire lives fighting to get control and autonomy over our bodies,” he said. “The guide empowers folks to continue to maintain control over themselves, even after they’re dead.”

Complete Article HERE!

Rabbi Laura Geller helps people ‘get good at getting older’

By Shannon Levitt

A few years ago, when Rabbi Laura Geller was still the senior rabbi of Temple Emanuel in Beverly Hills, California, she began to notice that many of her older congregants had started to drift away and she wanted to know why. At the time, she was also contemplating what her life after retirement might look like. So, she and her husband, Richard Siegel, decided to take the questions they were already posing to themselves and ask them of other seniors.

So began a listening journey that would result in “Getting Good at Getting Older,” a National Jewish Book Award finalist published in 2019.

Gathering small groups in private homes, Geller and Siegel spoke to about 250 congregants about what keeps them up at night, what gets them up in the morning and, without a job and colleagues, who they turn to for community.

“What we discovered is that people have fears of becoming invisible and becoming isolated. Your friendship network changes as you grow older and people that used to return your calls don’t anymore. People were concerned about purpose — “What will I do all day?” — and about becoming, “God forbid,” dependent,” Geller told Jewish News.

On May 3, Geller will present some of her findings about the importance of continually building relationships, making a difference, getting involved and giving back at an invitation-only Lion of Judah “Cocktails and Conversations” event.

“After hearing Rabbi Geller’s presentation at the International Lion’s Conference in Scottsdale this past December, we thought she would be the perfect speaker for our upcoming event,” said Gail Baer, vice president of philanthropy for the Center for Jewish Philanthropy of Greater Phoenix.

Geller’s book investigates the period between midlife, when people build careers and raise families, and “frail old age” — what gerontologist Barbara Waxman termed “middlescence.” Just as adolescence came to be understood as a distinct stage of life, neither childhood nor adulthood, the longevity patterns of this century have constructed something new at the other end of the age spectrum.

At last December’s conference, Geller attended two “overflowing” seminars on the topic led by Waxman.

“A lot of people want to talk about this and learn how to engage the experience, the talent, the passion, the resources of this age cohort,” Geller said. The day after her own book on the topic was published, it was number one on Amazon’s Jewish life section.

The book was also a kind of bookend to the seminal “Jewish Catalog,” the series of guides to “do-it-yourself” Judaism that Siegel had co-edited decades earlier. It was a best-seller for the Jewish Publication Society and attracted young Jews by popularizing an ethos of pluralism and gender egalitarianism.

Because Siegel and Geller were now themselves part of a cohort of older Jewish Americans facing new issues, “Rich really felt that we needed another Jewish catalog about how to navigate the challenge of growing older,” Geller said.

Sadly, while working on the book, Siegel was diagnosed with cancer and passed away before its publication. He was in the strange position of working on a book about getting older, a privilege he wouldn’t experience for himself. Ironically, the couple researched things for the book, like end-of-life issues and how to plan a funeral, that they used to deal with their personal situation.

“When Richie really did get sick, he had a really good death because there was nothing we hadn’t already talked about. A good death is if you’re lucky enough to be able to die at home, surrounded by people you love and there is nothing left unsaid. I’m very grateful for that,” Geller said.

During their listening campaign, Geller was surprised by how many people hadn’t had some of those tough conversations with their adult children. The book provides a how-to toolkit for people for that and many other topics, including making friends, giving back, getting involved, leaving a legacy and telling one’s story before it’s too late.

After the book’s publication, Geller was invited to speak at synagogues and Jewish community centers across the country. Once COVID-19 restrictions made travel impossible, she started doing virtual presentations.

“It was a wonderful opportunity to visit lots and lots of places because the cost was so much lower, and I spoke to at least 100 places virtually,” she said. Sometimes it was to a group of 20 people and sometimes more than 100. Despite the size, it was clearer with every conversation how much people wanted to talk about their fears and hopes.

During the Q&A period, someone might ask for advice on how best to downsize their households or give things away. Another person might chime in to say what they had done. Though these people might be in the same congregation, they didn’t know each other well enough to ask these questions before Geller’s appearance prompted them.

“Through these conversations, they were able to help each other because, even though we are the curators of our own lives, the truth is we are all figuring out what it means to be in this new life stage and we can really help each other do that,” Geller said.

While promoting the book, Geller kept learning, and if she were writing it again, she would likely spend more time writing about loneliness and isolation, she said.

A majority of people she’s spoken with want to stay in their homes, but that might entail several changes in terms of creating or modifying their community. A focus on building intergenerational connections can assist with that goal.

She also has a message for the Jewish establishment that focuses most of its resources on families with young children, which she calls “a myopic view.”

“I’m also part of the Jewish future with my experience, my wisdom, my resources, my talent, my desire to serve and my need to be in connection with different generations. That’s an asset in the Jewish community and to the extent to which that’s not acknowledged — they’re losing an incredibly important talent pool and that challenges the Jewish future,” she said.

Complete Article HERE!

‘A space to feel at ease with dying’

— How video games help people through grief

Players have long found a refuge from grief in video games – and a recent wave of games is tackling this difficult theme head-on

By Emma Flint

When James’s father died, he did what any of us would do in the throes of grief: he sought comfort. He went looking for it in the expected places – friends, family – but he found it somewhere unexpected: in the video game The Legend of Zelda: Majora’s Mask.

“Dad had always loved games. He gave me his NES when he got the SNES, and my formative memories were playing Mario Kart 64 with him, my uncle, and my little sister. Shortly after my father passed, the Wii added some N64 games to its catalogue that I had loved to play growing up, and that started the journey I needed to take to forgive him,” says James. “I had felt abandoned by him – when I was right at the shifting point of puberty, about to learn how to drive, he just wasn’t there.

“Majora’s Mask was always one of my favourites; I had the strategy guide and would read it to my dad in the truck when I would go with him to work during the summer. When I revisited it, I distinctly remember crying when I walked through the tunnel to the clock tower after the intro, knowing it was the first time I’d done it without him … People have theorised that Majora’s Mask symbolises the five stages of grief, and when I started to look at the game this way, it eventually helped me to visit his grave alone for the first time since his funeral, about a year after his death.”

The Legend of Zelda: Majora’s Mask.
The Legend of Zelda: Majora’s Mask.

James is one of many people who’ve found a route through grief in video games. It’s often assumed that we long for avoidance when we venture into imaginary worlds – and they can indeed offer vital escapism when the real world is difficult. But the nature of video games demands active participation, which can help players to process their feelings, free from real-world expectations about correct ways to grieve.

“What I’ve come to realise recently is how closely intertwined video games and nostalgia are,” says Stephen Sexton, author of the poetry collection If All the World and Love Were Young. “If you’ve spent a lot of time with a video game, its spaces and places become familiar to you, encoded in your memory. For me, the idea of forgetting the experience of grief was frightening. So, I found myself pinning my grief narrative – my mother’s illness and death – to something familiar: the levels and environments of Super Mario World. It’s become a kind of mnemonic device for me … the video game world became the bewildering world of grief; bright, overwhelming, symbolic.”

In recent years, several games have been made about the experience of grief itself, such as Gris, Spiritfarer, and Lost Words: Beyond the Page. In each of these examples, the labyrinthine complexities of grief are explored through a protective lens, letting us care for and guide grieving characters, enabling close proximity to our emotions while simultaneously shielding us from them.

Sometimes the guidance is subtle, delicately interwoven in a larger overarching story, as with Lost Words. But in games like Spiritfarer and Gris, we take an active hand in proceedings. These are potent narratives about death and the human experience that let us freely choose how to engage with them. “Loss is an intimate, personal experience,” Nicolas Guérin, Spiritfarer‘s creative director, explains. “And video games allow users to have an active, interactive introspection window, at their own pace.”

Spiritfarer characters on Deck.
Spiritfarer characters on deck.

In Spiritfarer – a game about housing troubled spirits on an ever-expanding houseboat, until they work through their unfinished business and pass on to the next realm – you (initially) can’t remove the houses of spirits who’ve crossed over. The limited space on your boat is taken up by seemingly redundant buildings, and we cannot ignore them. “Many players (and even people on the team) didn’t understand why they couldn’t remove these houses from the ship,” says Guérin.

“As an answer, I would remember a specific time in my life, which was when I was a young teenager, and my mother’s cousin had died. She was a lonely person, and kind of a hoarder. Her house was choked full of things, and my mother had to sift through them. Souvenirs from travels, tchotchkes from unusual hobbies, family mementoes. These objects form a trace of you; haphazardly assembled physical heritage, both dramatic and absurd, of the life you’ve had. Having to keep the departed spirits’ homes was exactly that … their home represented the burden of memories.”

Like novels and films, games can also offer hope, a route out of an emotional state that might feel inescapable. “Lost Words: Beyond the Page provides an example of how someone can get through this (which can be hard to see when you are in the middle of grief), and the strategies that other people use to manage and process their loss,” says Caitlin Hitchcock, a clinical psychologist and researcher at the University of Melbourne, who also acted as a consultant on the game. “Much of this is subtle – narrative is just one aspect of a video game. People who might be hesitant to watch a film about a young woman processing grief, might be more likely to play a video game. The game takes a hard topic, which many of us avoid, and presents it in a more palatable context.”

Lost Words: Beyond the Page video game screenshot.
Lost Words: Beyond the Page.

Games have the power to normalise grief and offer comfort and, as all art does, they can help us find meaning in our trauma so that we can overcome it. “Avoiding thinking and talking about the loss can maintain poor psychological wellbeing,” explains Hitchcock. “Playing a game about someone else’s grief is going to trigger thinking about your own grief, due to the way that associations between information are formed in the brain. A game can therefore reduce avoidance of your own grief, but potentially in a way that is less confronting or painful.”

Games about grief don’t necessarily intend to educate. Instead, they offer a sense of belonging to a universal experience; they can normalise death. “We never meant to impose a grand meaning or give a lesson with Spiritfarer. We just tried to open up a space for players to feel at ease around people who were about to die, to view death as a simple, undramatic part of life,” Guérin explains. “To simply enjoy the little things and the small talk, to sometimes face the burden and the grim fate of passing away, but more importantly to feel our connections, the mutual influences that are shaping us.”

Complete Article HERE!

‘I see the world through corpse-colored glasses,’ says popular mortician, author and YouTuber Caitlin Doughty

— Caitlin Doughty will be in Fargo to speak at Thursday’s Humanities North Dakota event, A Brave Conversation About Death.

Author and YouTuber Caitlin Doughty incorporates humor and history to discuss death and the funeral business.

By John Lamb

When she was eight years old, Caitlin Doughty saw a child fall to its death at a shopping mall and was immediately ushered away and encouraged not to talk or think about it.

“That was a pretty defining moment of my life. I was scared of death,” Doughty says. “We didn’t have the vocabulary for it, the safe area to hold fears. I just had to deal with it.”

041823.F.FF.CAITLINDOUGHTY_2
Caitlin Doughty’s first book, “Smoke Gets in Your Eyes and Other Lessons from the Crematory”.

She may have not had the means to express her questions and concerns as an 8 year-old, but 30 years later she’s written three books and created a popular YouTube series all about death.

The mortician, author and YouTuber is the guest of Humanities North Dakota for a sold-out event Thursday night at the Avalon Event Center.

So what is, as the event is called, a “Brave Conversation About Death”? Doughty says she will come warm up the crowd, plant some food for thought on the topic, then leave the stage to let the audience talk among itself about death. She’ll then return to the stage and follow-up with a discussion.

“If you grew up in America, we don’t have death literacy, a safe way to talk about death. We were never taught how to do it,” she says, though she adds that over the last decade, things have gotten better.

“With the internet, people are not comfortable not knowing something,” she says.

In the mid-2000s she wanted to learn more about the funeral industry and got a job in a crematory then attended school for a mortuary science program and graduated as a certified mortician.

Her real work had just begun. Doughty saw things in the funeral industry that could be changed and started The Order of the Good Death, which advocates for reforming attitudes and practices around death, funerals and mourning.

In 2012 she started the YouTube series “Ask a Mortician,” which features her addressing questions people may have about death and funerals in an often entertaining way. The show quickly attracted a following among the general public and now has 1.96 million subscribers, thanks to episodes like “Morbid Minute: Coffins vs. Caskets” and “ Preparing Severely Decomposed Bodies for a Viewing”.

Between the YouTube videos and her books, “Smoke Gets in Your Eyes & Other Lessons from the Crematory,” “From Here to Eternity: Traveling the World to Find the Good Death” and “Will My Cat Eat My Eyeballs? Big Questions from Tiny Mortals About Death” Doughty has developed a following. She’s heard of people dressing like her for Halloween (“The hair is low hanging fruit,” she says, referring to her signature dark bangs) and even had a drag queen parody her in a video.

“I think I have such a specific advocacy that there’s not a cult of personality,” she says, adding that followers who share her stance on funeral reform are called “Deathlings”.

Still, the segments drew criticism from the old guard in the funeral industry.

“There was discomfort and anger that I’m doing it in this medium and talking about a different future for the industry,” Doughty says. “Most funeral directors believe that the way they provide for the families is the right way.”

But Doughty says changing some practices can help us have a better experience with death and mourning. In particular, she feels the family should have the option to be more involved, mostly by spending time with the deceased.

“For so long we’ve been trained to call the funeral home as soon as someone dies so they can take the body away,” Doughty says. “In reality, death is not an emergency. Your mom is dead now and will still be dead in two days. You’re allowed to take the time you need to process. Being present with a dead body is the simplest and scariest thing to do, but without fail people have an incredible experience.”

She adds that with the exception of an extremely rare case like someone dying of Ebola, “it’s perfectly safe to be around the dead.”

People may wonder what those in the funeral industry were like as kids and Doughty says she wasn’t so different from others her age, though she was a bit of a goth kid.

“A lot of funeral directors held funerals for their pets. That wasn’t me. I wasn’t morbid. I wasn’t Wednesday Adams,” she says. “I was always interested in death as a cultural thing. I see the world through corpse-colored glasses.”

So what does someone who spends all of their time talking about death have planned for her own funeral? While she’s made some plans, she’s still undecided about what will happen to her body. For years she’d wanted a simple, green, or natural burial, to be wrapped in a sheet and buried in a hole in the ground to allow for easier decomposition. After learning more about the practice of human composting, she’s becoming more interested in that.

“I definitely want people to spend time with my dead body in my own house,” she says. “Put flowers on my body, have something to eat or drink and just hang out with me.”

Complete Article HERE!

I Was Estranged From My Mom For 11 Years

— Then She Died. Here’s How I’m Finding Peace.

By

Last week, “Succession” viewers were shocked by the death of Logan Roy, one of the show’s leads and the Roy family patriarch. In April 16’s episode, the fourth of season four, the show continued to explore the Roy children’s experience of grieving their father, who was portrayed to be a mercurial and often emotionally, verbally, or physically abusive man — and who was also the sun around which the other characters orbited.

As the show depicts in such heartrending detail, grieving can be a much more difficult, nuanced, and confusing process than it’s often portrayed. That’s especially true when grieving someone from whom you were estranged, or had a challenging relationship with, as was the case with the Roy family. This type of grief is messy, scary, and bewildering, and can trigger self-doubt and even guilt.

I know; I’ve been there. Before my mother’s death in January 2019, we’d been estranged for 11 years. During that time we never saw each other and spoke only a handful of times. When she died, I was left to grieve not only her but also the relationship we could have had — the relationship we should have had. The death itself was painful, of course, but it also brought up unexpected feelings around our initial detachment. It felt, at first, like I’d never be able to find peace or closure. And that felt terrifying.

Brittany McGeehan, PhD, a psychologist specializing in complex relationships and codependency, describes the feeling of it well: “Estrangement with your mother [or anyone] can feel like dying. It can also feel like being born again. It can feel like rage and it can feel like a relief,” Dr. McGeehan tells POPSUGAR. “Those feelings can shift or become magnified when the person dies if you didn’t have the opportunity to reconnect, or you tried to reconnect and the attempt failed.”

Before her passing, my mother had a long battle with drug addiction that began when she was 13. As is often the case in families affected by addiction, this put a huge strain on our relationship as mother and daughter. I had to create space between us for my own mental health and safety.

But I also created that space because I was angry. I remember often feeling as if she chose her addiction over me. While I now know the complexity and extreme challenges that come with the disease, as a child, all I knew (or thought I knew) was that my mother wouldn’t stop. It wasn’t until much later, after a lot of inner-child work, that I finally saw her for who she was: a person with a disease. She died of an overdose when she was only 45.

My conversation with Dr. McGeehan affirmed my experience of grieving an estranged loved one. “It’s like when they’re alive they’re already dead and haunting you, and then when they’ve died you feel lost all over again,” Dr. McGeehan says, referring to estranged loved ones. “You’re grieving the reality and the fantasy all at once, that you didn’t have the mother you deserved.”

As the Roy kids were quick to point out in episode three of this season, they weren’t technically estranged from their father. But their relationship was strained, to say the least. And now, whatever opportunity the children may have hoped or assumed they’d have for reconciliation with their living father is gone. Seeing the adult children come to terms with that reality is almost overwhelming.

It’s been four years, and with each passing year, I continue to do the work around my grief. Out of all the things I’ve learned about grief, I know that the inner-child work and grieving process doesn’t truly end, but morphs into something else. Now, I see grief as our feelings of love for a person, living on.

But immediately after my mother’s death, it was hard for me to let myself truly feel my grief: I had to contact the morgue to get her autopsy, I set up her cremation, I planned two funerals for my mother, who I hadn’t really seen or spoken to in 11 years. The aftermath of death is already tiring and a blur, but for me, it felt like a whirlwind.

I saw myself in the Roy kids’ behavior in episode four of “Succession.” The way Kendall threw himself into establishing a foothold as the new leader of the family business; the way Roman insisted he felt fine and had “pre-grieved” his father’s death; the way Shiv alternately fell apart and insisted she didn’t need any help; even in the way Connor seemed preoccupied by buying Logan’s apartment — somehow distancing himself from his dad’s death while making plans to literally move into his house. I felt like I was constantly doing, doing, doing in the days and months after my mom died — but even though so much of that doing was wrapped up in her, it also allowed me to carefully hold my grief over her death at arm’s length.

I knew I couldn’t go on living in a state of denial and numbness, though. So a year after my mother died, I found a therapist who helped me to go through the initial stages of grief and understand perhaps the most essential part of this type of grief: just because you were estranged, it doesn’t mean you aren’t allowed to grieve.

Once I grasped this, I could finally breathe. Since then, I’ve continued my work and learned new ways of navigating my loss, including talk therapy, support groups, writing my feelings out, inner-child focus, family constellation therapy and other trauma work — and I think I’ve come a long way.

“In the beginning, one thing that might help someone grieving the death of an estranged person is writing an honest eulogy. If you can let your inner child write one as well as your adult self, this exercise is even more helpful,” Dr. McGeehan suggests for anyone just starting the process of coping with this sort of grief. “Let yourself say that your relationship was complicated or they were incapable of loving you the way you deserved. Whatever it is that’s on your heart, say that. And then find someone safe to share it with who can hold space for you. I also encourage you to practice self-compassion. Just because you were estranged doesn’t mean you don’t get to grieve,” she adds.

Dr. McGeehan also says that “finding people who will validate your reality is so important. Therapy can be a resource but so can close friends or family — chosen family, or blood relatives.”

When my mother was alive, I often felt confused. I missed her. I still miss her. But how can I miss someone I didn’t know well for 11 years? This is the weighted, weird process of grieving someone who you were estranged from. I did know her, but I didn’t know her for 11 years, and sometimes, the passing of precious time makes it feel as if maybe I never knew her at all. But deep in my bones, I know that we knew each other in many ways, and loved each other still.

I talk about my mother a lot. I acknowledge her place in my life. I watch things that remind me of her. As I age, we look more alike, and sometimes, when someone takes a photo of me, I glance up and it’s as if I am looking at her, through the screen. I can still feel her around. I can feel her within me, I can feel her surrounding me, I see her every day, in the trees and the butterflies and the heartache and the joy and the bitter sadness. Maybe it is the grief talking, maybe it’s the wanting. Either way, it’s mine.

Complete Article HERE!

What is a death rattle?

— What to expect when expecting the end of life

By Julie Power

What is a good death? What is a death rattle?

No question is off limits for palliative care nurse specialist Rachael Zielinski, who tells families and relatives that death and dying are not something to whisper about.

To make her point, she raises her voice. “As a community we need to reclaim the experience of death and dying. It is OK to talk about it,” she tells a workshop called Last Days attended by 20 people in Sydney’s south.

A palliative care nurse with 20 years of experience, Zielinski also wants to bring back the D words: death, dying and dead. Euphemisms like “passing” or “gone” can be confusing, she said, recounting the confusion of a woman who didn’t realise her death was imminent.

About 160,000 people die in Australia each year. Zielinski has seen hundreds die.

Every Christmas Day she remembers the first death she saw: Mrs Merriweather’s nearly 40 years ago.

Then only 18 and living in Sandgate, England, Zielinski sat with the older woman in her final moments and then kept vigil next to the woman’s body.

Last Days was developed by aged and community care provider HammondCare to demystify death and help people navigate death and dying. More sessions across Sydney have been funded by NSW Government’s Sydney North Health Network.

HammondCare’s Dr Andrew Montague said carers, family members and friends were often unprepared for what may be confronting at end of life.

“There is a need to help those who care for people at end of life to equip them to navigate their journey,” said Montague, the general manager health and hospitals. “It will also seek to encourage more openness in making and documenting end-of-life choices.”

According to a survey of 1000 Australians last year by Palliative Care Australia, 88 per cent of respondents agreed it was important to start thinking and talking about their wishes and preferences for care (if they were to become seriously or terminally ill). Despite that, only 56 per cent of those surveyed had talked about or recorded their end-of-life wishes.

Katrina Pearson was at the session to discuss how to manage the palliative care of her mother Robyn, now 72, who was diagnosed with a degenerative disease 11 years ago.

Pearson spoke with her mother about her wishes – before she agreed to go into an aged care facility when she could no longer walk. “It is important to talk about it, and it was good that we talked when she was able to do so.”

Research from Western Australia’s palliative care experts found many people thought palliative care was for the last days of life, thinking their doctor or specialist had given up. Yet research from the United Kingdom found people who receive palliative care earlier live longer and have a better quality of life.

Zielinski said: “We love early referrals. When we get people who are in the terminal phase, we get upset. We could have done so much more.”

Palliative care’s practical aspects include writing a will, delegating someone to make decisions about care, managing symptoms and pain, and identifying what is important in the final days and where and how someone wants to live and die.

Often the wishes of the dying are far from grandiose, such as a desire to eat at a local restaurant once more, look out on a garden, have grandchildren visit or have their dog on the bed.

“Many want to stay at home, in their same bed, but may change their opinion,” Zielinski said. “Dying in a hospital is not a failure.”

But dying at home takes a village.

Zielinski hopes the Last Day’s three-hour workshop and workbook will provide a place to ask questions and challenge preconceptions that caring for someone at the end of their life is something technical, private and hidden.

“Death and dying are the last taboo. We are all going to die, and many of us will care for someone who is dying.”

Death was a process like birth, with recognisable stages and progression, said Zielinski. Unlike birth, though, there are few workshops for families, and no books on “what to expect when you are expecting [to die]” or film adaptations.

The person dying usually sleeps more and eats and drinks little or nothing, which can upset families used to making food to demonstrate love and affection.

“Someone in their last days may only want a tiny spoonful of yoghurt,” she said.

The dying person may attempt to eat to show their love, too.

She recalled a woman who made her husband a grazing plate of a tiny piece of “posh chocolate”, a minuscule bit of sandwich, and fruit.

“He took a little nibble from the sandwich and put it back,” Zielinski said.

That upset his wife.

“I said [to her], ‘That is just the most beautiful thing I’ve seen. It’s a pure gift of love. Look at that, he actually doesn’t need or want it.’ So it’s about education. It’s about understanding those changes.”

Families frequently find “the death rattle” – experts call them terminal secretions – distressing because they think the person dying may be in pain or anguished.

“It is like a snore, which you are not aware you are doing,” she said.

It is caused by uncleared mucus at the back of a throat, she told the workshop. “That gurgly sound you hear, well, that person is so deeply unconscious, they’re not aware that that saliva is sitting there – that they are not trying to cough or swallow to get rid of it. But the sound will distress you. So remember that Rachael said this might happen. It’s not distressing Mum or whomever that is.”

Many deaths are gentle but a few are traumatic. In those cases it is often the words of a carer or a family member, even a prayer or a kind word, that make more of a difference than any medicine.

That was the case with a deeply religious woman who couldn’t be calmed until a pastoral care worker kneeled with her and prayed. She died soon after.

“I have never seen anything like that,” said Zielinski. “We [health professionals] can’t do what [family and friends] can do. We are empowering people to think they have a place.”

A pilot of the program over the past two years found 73.9 per cent of participants strongly agreed that they know more about how to support a person in their last months, weeks and days of life, while nearly 70 per cent understood what to do to relieve physical symptoms.

Complete Article HERE!