Why planning for death should start when we’re living

Dr. B.J. Miller.

by Jonathan Bastian

Death and dying are inevitable and a natural part of life’s cycle. The pandemic has brought the issue of our own mortality into sharp focus. Many people have died alone, away from family, and in the isolation unit of a hospital.  It’s not an option many would choose. Palliative care expert Dr. B.J. Miller talks with KCRW’s Jonathan Bastian about his experiences caring for those who are at the end of their lives. He says one of the big takeaways of this moment is that we should make preparations and think about our mortality when we are healthy.  

The following interview excerpts have been abbreviated and edited for clarity. 

KCRW: You’ve spent countless hours with folks that are nearing the end of their life. What do people want as they prepare to die?

B.J. Miller: Well, in general there’s a ton of individual variation. This is why the subject is so interesting and that’s where some of the joy is. For the most part people want to be at home when they die. And by home, most people mean not the hospital and not the nursing home. Dying at home is doable, especially with hospice. But again here, what I really think people mean is they want to die in familiar settings, where they’re comfortable surrounded by people they love, wherever they call home. In other words, to have a minimum of gear and machines propping them up. A lot of people find peace, in the realization that they are natural creatures and that death is a natural phenomenon. And the more they can touch into that nature, the more at peace they feel, as a rule. But some of us see ourselves as fighters and quote unquote, “when I go down, I go down swinging,” and the idea of an ICU death with desperate measures happening, is fitting, so to each their own.

But to answer your question, dying at home, dying in a more natural way, dying comfortably enough so that you can have time with people you care about. So you can think about anything you know, something besides your pain for a moment here and there. People want to be at peace with their loved ones.

The idea of closure is an invented notion. Nature doesn’t promise us closure except for the idea of birth and death. But a lot of us are just social creatures and are thinking about our legacy, what do we leave behind? So a lot of people say, I just want to make sure I’m not a burden to my family. I want to make sure my family is okay.

It makes sense because I think a lot of what’s dying is the ego and the more each of us can find a way to to love life outside of ourselves beyond ourselves, but inclusive of ourselves, the easier death is on us, the more readily we can, we can handle it.

As we navigate this pandemic, it highlights some of the breakdown in the healthcare system in dealing with death?

The last thing any of us wants to do is shame each other as we’re heading off the planet. But this is exactly why — whether it’s COVID, being hit by a bus, the idea of a sudden death, of suddenly being here and then not being here, that’s always possible — when we make this subject matter taboo — hard to talk about, and the healthcare system doesn’t make it any easier and doctors aren’t trained to talk about it — we end up kind of deferring the inevitable until it’s really too late.

So one of the takeaways right now is we should all be doing our advanced care planning, our wills, our healthcare proxy, the variable putting our affairs, we should all be thinking about our mortality, if only to make sure we are present for the life we have. These are lessons that have been in the population for eons but are easily forgotten because death is such an obnoxious topic, especially in modern society. But we can be swept away in an instant and it would be so helpful to have had these conversations with loved ones before and document our wishes, especially when we’re healthy because you just never know.

You worked at the Zen Hospice Center for a long time in San Francisco, is there a spiritual dimension that you are aware of being around death for so long?

You know, I don’t know what word I like, religion, faith, spirituality, they’re all importantly different. I believe that we are all connected not just person to person, but person to tree, person to chipmunk, person or whatever, that we’re all part of something that we can’t possibly fathom. And as smart as we are, there’s still so much we don’t know. So there’s got to be some deference to mystery, some deference to not knowing.

You can look at that void or that abyss or that mystery and project judgments or you can project a sort of a universal love. For me, I happen to believe that, in general, adjectives and qualifications are human invention. But one way or another, I look at that mystery, I feel all that connection and I see love. I see humility in all that we don’t know and yet are totally a part of.

You can imagine how much this comes up when you’re dealing with patients and families, friends, anybody at the end of life.  If I can sit with a patient and they’re in the throes of wondering what’s going to happen, maybe scared about what’s going to happen when they die, I often end up just talking with people about mystery and about not knowing and say, “Well, you know, I don’t know either, you know, I’ve been around death and dying for a lot of a lot of years and a lot of people and I still have no idea. And you know, isn’t that amazing?”

When I look up in the night sky, and I can see all these stars and light that’s hitting my eyes that left that source billions of years ago, empirically, there’s enough proof of connection among us or fascination around us. I’m coaxed into a faith that love is somewhere binding us. And even if it’s not the natural order, it’s certainly something that we inject and put love and meaning into this mystery.

And so sitting at the bedside, there’s a permissiveness at the end of life that I’ve come kind of addicted to, because if you’re with someone who’s only going to be around for a while, you can quickly go to the vulnerable place, you can quickly love someone without fear of Gosh, if I tell them, I love them, they’re gonna get expectations and you don’t have to talk yourself out of this very simple thing of loving someone.

So at the end of life, I don’t know what’s coming either but I’m gonna sit here with you and we’ll walk up to the edge of that abyss with you and I’m not going to go anywhere. And I’ll be thinking of you even after you’re gone and I love you, and we get to share this planet at the same time. Isn’t that amazing?

Complete Article HERE!

The virus is robbing many people of a ‘good’ death.

How do we change that?

COVID-19 has taken away our ability as a society to avoid the topic of death. But we’ve needed to improve our ‘death literacy’ since well before the pandemic hit.

By

For years, we kept death at arms length. We awkwardly avoided it, looked the other way, and hid it behind layers of euphemism.

But since January, death has been inching closer, a drum beat in the back of our minds getting louder as COVID-19 spread around the world. Body counts became the focus of every news update. Field hospitals in Central Park. Mass graves in Italy. A gnawing sense that within weeks, this could happen here.

In the United States, deaths started losing their meaning. The numbers quickly dwarfed 9/11, then Vietnam, then every war combined since Korea. While 189 Australians have died, and the numbers keep rising through Melbourne’s awful outbreak, there’s still a sense of distance. People die from COVID-19 in hospitals, and nursing homes, far away places we can easily ignore.

But with COVID-19, the issue isn’t who dies, or where they die, it’s often how they die. And that is something we, as a death-averse culture, might not be ready for.

A death with dignity

For a culture where talk of dying is so taboo, so many of us want the same thing — a death with dignity.

A good death, says University of Wollongong Associate Professor of General Practice Joel Rhee, can be hard to achieve. But what is key is having a sense of control.

“It’s a death where you’re in an environment where you’re surrounded by people you love. You’ve got some dignity about how you’re going through the last few months,” says Rhee.

“It’s when your concerns, fears, psychological and spiritual needs are taken care of.”

COVID-19 takes away all that. The virus robs people, no matter their age, of any sense of control over their final days.

People die slowly and painfully, choking to death in near silence. They die alone, isolated from friends and loved ones, with exhausted health workers draped in PPE. And when they go, the atomising force of the virus disrupts the post-death rituals that give loved ones the closure they need.

Funerals are restricted to just a handful of people. The whole process of collective bereavement, gathering under one roof to hug and cry, is suddenly too risky. When residents died at St Basil’s in Melbourne, their families couldn’t even enter the facility to collect their belongings.

It’s that loss of dignity and control, that isolation from loved ones, that make the cynical calls to let the virus rip seem all the more callous. Deaths from COVID-19 aren’t just numbers on a spreadsheet. They’re real people, with families who are robbed of the chance to do right by them.

Jennifer Philip, chair of palliative medicine at the University of Melbourne, says the pandemic has made the job of supporting people in their final days so much more challenging.

“A big part of what we do in palliative care is communication and supporting families. But that’s all done remotely, behind layers of PPE,” Philip says.

“When you’re doing telehealth, many of the usual gestures we use are not visible. And there’s a lot of work with connectivity — using iPads and technology that older people may not be comfortable with.”

We need to talk about dying

But even before the pandemic hit, what stops people getting a good death, according to Philip, is our inability to talk about it, often till it’s too late.

“We don’t talk about it in a meaningful way, or grown up way. Certainly not in a nuanced way,” she says.

That’s something Jessie Williams wants to change. She’s CEO of the Groundswell Project, a not-for-profit that is trying to change the way Australians talk about death.

Once upon a time, Williams says, death was sudden and it was everywhere. But as we got wealthier, as medical science advanced, we were better able to draw out our final years, and push it away.

“We don’t see death, we don’t touch it and we don’t smell it,” Williams says.

Williams, who works with businesses, and runs public campaigns, to promote what she terms “death literacy”, says she’s felt a bit of a change during the pandemic.

“We’ve been overwhelmed — we’ve seen more engagement from new people coming on board.

“We’ve had more people coming forward for end of life planning workshops, more people are reaching out to access materials.”

In his work as a general practitioner, Rhee says he’s had more patients wanting to talk about death. They’ve seen the numbers, and the pictures. They don’t want to go like that.

“They see people passing away, and they think about it a bit more,” he says.

The pandemic has upended our lives so much in under a year that it’s hard to tell what will stay entrenched. Even habits like social distancing and hand hygiene, so much a part of our conversations in March, seem to have fallen by the wayside a little.

But perhaps this period, where death is everywhere, could start to subtly rewire how we view the end.

When we understand pain

Sometime around the 4th or 5th Century BCE, in what is now Nepal, there lived a prince. Raised amid total luxury, the prince’s parents did everything to shield him from nasty, brutish and short life outside the palace grounds.

If you can believe it, the prince didn’t leave the palace till he turned 29. The first thing he saw when he’d snuck out was a man whose body was crippled by ageing. He’d never seen old age. Next was a sick man. He’d never seen disease. The prince then came across a funeral procession. He’d never seen death either. The last thing the prince saw was an ascetic — a man who’d given up life. The prince returned troubled by what he saw. The next day, the man who would become the Buddha gave up everything. Jarred by suffering and death, he chose to live the life of an ascetic.

One moral of the Buddha’s story is that the experience of death, of realising the depths of human suffering and the limits of our own mortality, can change us. Like the Buddha, many in the affluent West grow up insulated from death. And while grappling with our own mortality doesn’t necessarily produce such a radical transformation, it at the very least produces conversations and feelings we might not otherwise have.

Philip says when people start talking about death, it can be a moving, humbling and relieving experience. Often, the conversations they have aren’t laced with morbidity. Instead, they’re often far more mundane. People talk about what they value, and, at a time when they’re at their most mature, decide what matters to them.

Perhaps this is the way into talking about death. Because so much of our discomfort around dying is part of a larger, more innate human difficulty with talking about things that are inconvenient. We like to sweep uncomfortable conversations under the rug and forget about them.

The sooner those conversations about who or what matters to us happen, the better. As Philip says:

“You have to tell people you love them, or you forgive them, or you thank them. If those things are unsaid that’s a great tragedy for those left behind.”

Complete Article HERE!

Cancer, Religion and a ‘Good’ Death

It is hard to know how much my patient, caught in an eternal childhood, understood about his cancer.

By A. Sekeres, M.D.

When I first met my patient, three years ago, he was about my age chronologically, but caught in an eternal childhood intellectually.

It may have been something he was born with, or an injury at birth that deprived his brain of oxygen for too long — I could never find out. But the man staring at me from the hospital bed would have been an apt playmate for my young son back home.

“How are you doing today, sir?” he asked as soon as I walked into his room. He was in his hospital gown, had thick glasses, and wore a necklace with a silver pendant around his neck. So polite. His mother, who sat by his bedside in a chair and had cared for him for almost half a century, had raised him alone, and raised him right.

We had just confirmed he had cancer and needed to start treatment urgently. I tried to assess what he understood about his diagnosis.

“Do you know why you’re here?” I asked him.

He smiled broadly, looking around the room. “Because I’m sick,” he answered. Of course. People go to hospitals when they’re ill.

I smiled back at him. “That’s absolutely right. Do you have any idea what sickness you have?”

Uncertainty descended over his face and he glanced quickly over to his mother.

“We were told he has leukemia,” she said. She held a pen that was poised over a lined notebook on which she had already written the word leukemia at the top of the page; I would see that notebook fill with questions and answers over the subsequent times they would visit the clinic. “What exactly is that?” she asked.

I described how leukemia arose and commandeered the factory of the bone marrow that makes the blood’s components for its own sinister purposes, devastating the blood counts, and how we would try to rein it in with chemotherapy.

“The chemotherapy kills the bad cells, but also unfortunately the good cells in the bone marrow, too, so we’ll need to support you through the treatment with red blood cell and platelet transfusions,” I told them both. I wasn’t sure how much of our conversation my patient grasped, but he recognized that his mother and I were having a serious conversation about his health and stayed respectfully quiet, even when I asked him if he had questions.

His mother shook her head. “That won’t work. We’re Jehovah’s Witnesses and can’t accept blood.”

As I’ve written about previously, members of this religious group believe it is wrong to receive the blood of another human being, and that doing so violates God’s law, even if it is potentially lifesaving. We compromised on a lower-dose treatment that was less likely to necessitate supportive transfusions, but also less likely than standard chemotherapy to be effective.

“Is that OK with you?” my patient’s mother asked him. I liked how she included him in the decision-making, regardless of what he could comprehend.

“Sounds good to me!” He gave us both a wide smile.

We started the weeklong lower-dose treatment. And as luck would have it, or science, or perhaps it was divine intervention, the therapy worked, his blood counts normalized, and the leukemia evaporated.

I saw him monthly in my outpatient clinic as we continued his therapy, one week out of every month. He delighted in recounting a bus trip he took with his church, or his latest art trouvé from a flea market — necklaces with glass or metal pendants; copper bracelets; the occasional bolo tie.

“I bought three of these for five dollars,” my patient confided to me, proud of the shrewdness of his wheeling and dealing.

And each time I walked into the exam room to see him, he started our conversation by politely asking, “How’s your family doing? They doing OK?”

Over two years passed before the leukemia returned. We tried the only other therapy that might work without leveling his blood counts, this one targeting a genetic abnormality in his leukemia cells. But the leukemia raged back, shrugging off the fancy new drug as his platelets, which we couldn’t replace, continued to drop precipitously:

Half normal.

One-quarter normal.

One-10th normal.

One-20th normal.

He was going to die. I met with my patient and his mother and, to prepare, asked them about what kind of aggressive measures they might want at the end of life. With the backdrop of Covid-19 forcing us all to wear masks, it was hard to interpret their reactions to my questions. It also added to our general sense of helplessness to stop a merciless disease.

Would he want to be placed on a breathing machine?

“What do you think?” his mother asked him. He looked hesitantly at me and at her.

“That would be OK,” he answered.

What about chest compressions for a cardiac arrest?

Again his mother deferred to him. He shrugged his shoulders, unsure.

I turned to my patient’s mother, trying to engage her to help with these decisions. “I worry that he may not realize what stage the cancer has reached, and want to avoid his being treated aggressively as he gets sicker,” I began. “Maybe we could even keep him out of the hospital entirely and allow him to stay home, when there’s little chance …” My voice trailed off.

Her eyes above her mask locked with mine and turned serious. “We’re aware. But we’re not going to deprive him of hope at the end …” This time her voice trailed off, and she swallowed hard.

I nodded and turned back to my patient. “How do you think things are going with your leukemia?”

His mask crinkled as he smiled underneath it. “I think they’re going good!”

A few days later, my patient developed a headache, along with nausea and dizziness. His mother called 911 and he was rushed to the hospital, where he was found to have an intracranial hemorrhage, a result of the low platelets. He slipped into a coma and was placed on a ventilator, and died soon afterward, alone because of the limitations on visitors to the hospital during the pandemic.

At the end, he didn’t suffer much. And as a parent, I can’t say for certain that I would have the strength to care for a dying child at home.

Complete Article HERE!

She watched her mother die.

It inspired her most hopeful novel yet

By Stuart Miller

In the quietly simmering drama of Karolina Waclawiak’s new novel “Life Events,” Evelyn has lost her job, her marriage is flatlining, and she frequently frets about death, especially the eventual passing of her parents. Only when this Silver Lake drifter trains to become a death doula — to have the uncomfortable conversations that help the terminally ill come to terms with the life they lived — does she begin to shift from dreading the future to living in the present.

Evelyn is in a near constant state of “pre-grieving,” or what others call “anticipatory grief,” Waclawiak said during a phone interview last spring. “But we have no control over grief. That’s not how it works at all.”

The author of two previous novels began writing “Life Events” six years ago. “It’s unfortunately very timely,” says Waclawiak. “We’re all in this collective grief now. Our loved ones are dying alone, and I can’t think of anything worse. We’re all going to be collectively traumatized, and that’s something we’re going to have to deal with.”

Waclawiak’s initial inspiration was an episode of the podcast Criminal about an “exit guide,” a companion for terminally ill people ending their lives. Fascinated by new approaches to end-of-life issues, she watched videos of people working in the death-with-dignity movement; soon, she took a death doula course herself.

While her research explored the broader societal changes behind the movement, the novel’s themes are intimately personal and somewhat autobiographical. Waclawiak helped care for her grandfather when he was dying 13 years ago. Her mother, who was sick off and on since Waclawiak was 12, was diagnosed with cancer in 2015, soon after Waclawiak started writing “Life Events.” She died last September.

“Obviously this was a big part of why I wrote this,” she says, adding that she writes to understand her pain. “I start with a larger question that I’m trying to face, not necessarily answer.”

In her first novel, “How To Get Into the Twin Palms,” also set in L.A. and featuring a Polish immigrant who passes herself off as Russian, the big question was, “Who are you if you take away your ethnic identity?” Her follow-up, “The Invaders,” grappled with the “limitations and stresses” of living among people of a higher socioeconomic class than you are.

Those questions too arose from Waclawiak’s life. Her parents fled Communist Poland when she was two, eventually setting in suburban Connecticut. “I’m extremely Americanized, but I always felt like an outsider,” says Waclawiak, who studied screenwriting at USC and then worked as an assistant on “The Simpsons.” After getting an MFA at Columbia University, she began writing screenplays in New York — the well-received “AWOL” and a second film that was in preproduction when the pandemic hit. Now she’s back in the city where “Life Events” is set. (“Set” is an understatement: Each of her books is suffused with a deep sense of place, owing to Waclawiak’s road trips through the regions she’s writing about.)

Waclawiak believes her background has better prepared her for facing death than most Americans. On return trips to Poland, her family would join others who spend Saturdays at the cemetery, visiting dead relatives and cleaning their gravestones. “There’s a sense of ritual there,” says Waclawiak, “while Americans approach death with a sense of fear and denial.”

Despite its morbid subject matter, “Life Events” is more optimistic than her previous work, in which the protagonists sometimes seemed hellbent on self-sabotage or even self-destruction. In contrast, Evelyn’s work with her dying clients helps her reassess everything, from her marriage to her long-term future, with newfound clarity.

“I felt a book about death was going to be tough to read, and I was thinking about the reader’s experience,’” Waclawiak says. “I really wanted Evelyn to use her proximity to death to be a catalyst to push herself out of this stagnation and to feel a sense of hope, because you have to. This life is so hard.”

Struggling to give Evelyn more control over her messy life, Waclawiak wrote an entire first draft in the third person, then threw almost all of it away. “Evelyn had to have a sense of agency,” she says. “That awareness that you have choices is a really huge shift in the storytelling.”

Call it a midlife awakening: Since writing her last novel, Waclawiak turned 40 and watched her mother get sicker. “You can’t help but take a microscope to the way you are living,” she says. Her mother, approaching her life’s end, pushed Waclawiak to think about her own future — about “seeing what I can do differently now and how I can change my perspective.”

What colleagues notice most about Waclawiak’s work is that fine balance between fatalism and optimism. She is not a “cheerful writer, but she’s not reflexively cynical,” says Ben Smith, the New York Times media columnist and former editor in chief of Buzzfeed, where Waclawiak works as an editor. “She captures the desperation Americans feel in leading superficially ordinary lives.”

Emily Bell, who edited “Life Events” at Farrar, Straus and Giroux, praises the author’s “ability to balance an understated tone with high emotional stakes” as she explores “what it means if you don’t fulfill the expectations of society.”

As for Waclawiak’s expectations, she has always held a day job while writing. “I never had illusions that my creative work would pay the bills,” she says, “and that gives me the freedom to write weird stuff.”

She knows some readers “have an issue with complicated women who don’t always make the best choices for themselves,” but she refuses to tidy up her fiction. “There’s an expectation of how women should behave; they shouldn’t be messy or be complicated in a way that seems vulnerable or gross. But there are countless male narrators in fiction and all over television who are highly self-destructive.”

Waclawiak became so frustrated by aspersions on her “unlikable female narrators” that she designed a course at Columbia around such characters. “Let me put a woman up against the wall and see how she squirms out of whatever situation I put her in, not in a way that feels exploitative,” she says. “It’s about realizing there’s something to learn in the suffering and the pain.”

In “Life Events,” it’s about Evelyn learning not just that she has choices but that she has the chance to create new ones — a wisdom that emerges, ironically, from coping with the one thing no one can opt out of. “When the people you love are dying, it changes you, and you really start to question what you thought was important,” Waclawiak says. “I wanted the reader to think about how consciously they were living their own lives.”

Complete Article HERE!

A will doesn’t cover all your bases when it comes to end-of-life decisions.

Here’s what else you need

By Sarah O’Brien

  • A will is just one of several legal documents that help your loved ones know your end-of-life wishes.
  • If a person passes away without a will, a court may decide who gets their assets and who would care for any surviving children.
  • However, some assets pass outside of the will, including retirement accounts and life insurance.

As the coronavirus continues sweeping through U.S. communities and the death toll keeps rising, you might be considering your own mortality.

Regardless of the pandemic, experts say it’s important to plan for when you’re not here — that is, give thought to what would happen to your bank accounts, your home and your belongings, as well as, perhaps, your dependents.

That planning should start with a will. And apparently people know they need to take action, based on Google trends showing a jump in searches for information about creating one. 

“In every jurisdiction, if there isn’t a valid will, assets will pass on to your heirs by law, who may or may not be who you would have provided for in a will,” said Samantha Weyrauch Davis, an estate planning attorney and director with the law firm Hall Estill in Tulsa, Oklahoma. “It also lets you name a guardian for children.”

If you pass away with no will — called dying intestate — a state court decides who gets your assets and, if you have children, who will care for them.

This means that if you have an unmarried partner or a favorite charity but no will, your assets may not end up with them. Typically, the courts will pass on assets to your closest blood relatives, even if that wouldn’t have been your first choice.

However, a will is just one piece of an “estate plan.” An estate just refers to what you own — your financial accounts, possessions and any real estate. Putting a plan in place for those assets helps ensure that upon your death, your wishes are carried out and that family squabbles don’t evolve into destroyed relationships.

In other words, it’s partly about making things easier for your loved ones during an already-difficult time.

Here’s what else you should consider if you want to prepare.

What a will can and can’t do

A will is a document that lets you relay who gets what when you pass away. You can get as specific as you want (you leave a certain family heirloom to a particular person) or keep it more general (you want your surviving spouse to get everything).

However, there are some assets that pass outside of the will, including retirement accounts such as 401(k) plans and individual retirement accounts, as well as life insurance policies.

This means the person named as a beneficiary on those accounts will generally receive the money no matter what your will says. (Be aware that 401[k] plans require your current spouse to be the beneficiary unless they legally agree otherwise).

Those [online] forms or software may not be compliant with your local law, so look at the fine print.

Samantha Weyrauch Davis
Director with Hall Estill

Regular bank accounts, too, can have beneficiaries listed on a payable-on-death form, also known as a POD, which your bank can supply.

If no beneficiary is listed on those non-will items or the beneficiary has already passed away, the assets automatically go into probate. That’s the process by which all of your debt is paid off and then the remaining assets are distributed to heirs. The process can last several months to a year or more, depending on state laws and what’s involved in handling your estate.

If you own a home, be sure to find out how it should be titled to ensure it ends up with the person (or people) you want it to, because the laws can vary from state to state. Moreover, there can be other considerations when it comes to how a house is titled, including protection from potential creditors or for tax reasons later when the home is sold.

Another big decision

As part of the will-making process, you’ll need to pick an executor of your will (sometimes called a personal representative).

This can be a big job, experts say. Things such as liquidating accounts, ensuring your assets go to the proper beneficiaries, paying any debts not discharged (i.e., taxes owed to the IRS), and even selling your home could be among the duties undertaken by the executor.

In other words, just because you’ve known your best friend since elementary school doesn’t mean handling the challenge of being an executor is up their alley.

Where to get a will

To prepare a will, you can turn to an estate planning attorney in your local area — to ensure familiarity with state laws — or use an online option. However, be aware that not all of the web-based alternatives will necessarily reflect the specifics of your state’s law.

“There’s risk in doing it that way,” Davis said. “Those forms or software may not be compliant with your local law, so look at the fine print.”

If an online option ends up being appropriate for your situation, you may be able to find a form to download for free. Software will-making options can run about $60 or more, depending on what else is included. To set up an estate plan with an attorney could run several hundred dollars to more than $1,000, depending on the complexity of your situation.

Also, you’ll need to have a witness and/or notary sign it and make the document official, depending on the state where you live. The American College of Trust and Estate Counsel’s website offers a guide to laws and accommodations in every state if in-person meetings are not permitted due to the pandemic.

Other documents

Typically, estate planning also includes preparing a few other legal documents. This includes an advance health-care directive, also known as a living will.

This document outlines your wishes if you become incapacitated due to illness or injury.

Say you are on life support. Instead of a loved one making the agonizing decision whether to end all life-saving measures, your wishes would be specified in a legal record.

It’s also worth assigning powers of attorney. If you become incapacitated, the people to whom you grant powers of attorney will handle your medical and financial affairs if you cannot.

Often, the person who is given this responsibility when it comes to your health care is different from whom you would name to handle your financial affairs.

As with choosing an executor, make sure whoever you hand the financial reins to is trustworthy and smart.

“I tell my clients it’s really important to carefully consider the individuals you name,” Davis said. “You want to make sure they have the ability, skill set, time and desire to make such decisions and do these sorts of things.”

Make a list of critical documents

While it can be hard to imagine your own death, picture your family having to search through drawers for your original will, documents regarding your bank accounts and other assets, and maybe even your Social Security number.

The best way to avoid forcing them to deal with that task on top of mourning is to leave an organized list of information that the will’s executor will need to settle your estate, experts say. Be sure this includes passwords so your online accounts can be accessed.

Consider a trust

If you want your kids to receive money but don’t want to give a young adult — or one prone to poor money management — unfettered access to a sudden windfall, you can consider creating a trust to be the beneficiary of a particular asset.

A trust holds assets on behalf of your beneficiary or beneficiaries, and is a legal entity dictated by the documents creating it. If you go that route, the assets go into the trust instead of directly to your heirs. They can only receive money according to how (or when) you’ve stipulated in the trust documents.

The average cost to set up a trust using an attorney ranges from $1,000 to $1,500 for an individual and $1,200 to $1,500 for a couple, according to LegalZoom.com. Doing it yourself with online software could run several hundreds of dollars or more.

Complete Article HERE!

When my 18-year-old son died, no one let me talk about him

By Leia Rosenberg

When doctors tell you that your child has cancer, your world stops.

In January 2015, my then 17-year-old son, Connor, was diagnosed with T-lymphoblastic lymphoma, an aggressive form of non-Hodgkins. At first I went into a state of complete shock and disbelief. All I could do was cry. However, once the medical professionals told us that there was a high chance of the illness being cured, hope set in.

Being a ‘fixer’ by nature I clicked into the best coping mechanism I know – trying to sort out the problem, but of course illness doesn’t work that way. The prognosis was positive and treatment began, in the form of chemotherapy.

At the time, I didn’t notice anything else going on in the world. I have a vague recollection that people were very supportive, with acquaintances coming up to me in the local shop asking ‘How’s Connor doing? We are thinking of you all’ – but that’s it. All I was focused on was getting my boy better.

In September that same year, he was due for routine blood tests, but had come home from the hospital for a few days and was staying at his dad’s. When I went to collect Connor, I arrived to find him nearly unconscious on his bed. He was bleeding out of everywhere, so we drove straight to the hospital.

I was so frightened, my anxiety was in overdrive. I knew something was very wrong, and called his dad, who joined us in the hospital.

That was the day we were told that Connor’s cancer was terminal.

The medical staff took us to one side and said that we didn’t have that long left with him. I was in shock, I couldn’t believe it – it wouldn’t sink in. A small amount of radiation therapy was given nearer the end of his life, but the tumours had grown near vital organs and radiation couldn’t be accurately targeted without causing further damage.

As mums, we are innately driven to protect our children but I couldn’t keep Connor safe or make him better. I felt like I had failed my son.

Less than a year after his diagnosis, in October 2015, when he was just 18 years old, Connor died from his cancer. Days before it happened, he told me that he was only holding on for everyone else – so I told him that it was OK to let go.

His body slowly gave up, and bit by bit his organs started to shut down before he finally took his last breath in front of us. There are no words to fully encapsulate how this feels; how watching the life you gave to someone leave before their time.

I didn’t go out for a long time, I couldn’t walk in a world where everyone else was still carrying on as normal (Picture: Leia Rosenberg)

Partially, I felt relief – Connor had been suffering – but the rest of me was exhausted, broken and numb. Death is difficult for anyone, but when your child dies, the pain is insurmountable.

For the first few weeks, all I could do was sleep. I didn’t go out for a long time, I couldn’t walk in a world where everyone else was still carrying on as normal. And when I did, the well-wishers in the community steered clear of me or stared with pity and concern. 

Old work colleagues who would have usually said hello, crossed the road and avoided eye contact. Others would brave a fleeting ‘I’m so sorry’ and walk off. I tried to go back to work quite soon after Connor had died. I needed a distraction – but I was told to go home, because they didn’t want to deal with me.

A few weeks after his death, family members began to accuse me of being selfish because ‘everyone has problems’ and told me to ‘stop moping around’. Friends, who couldn’t stomach being in my company for more than 10 minutes at a time stopped contact all together. I felt like a leper.

Was I difficult to be around? Absolutely. I’d watched my only son die in front of me. I was sad and depressed, and so angry at the world. I also experienced significant PTSD symptoms of flashbacks, invasive memories, anxiety, vivid recurring dreams and sleeping difficulties – it took years for this to stop.

Perhaps that’s why people started treating me differently or avoided talking about Connor, but all I needed was for them to be there. Sometimes, just sitting in silence is enough. You can’t fix this, and neither can I.

Throughout the pandemic, my personal experience of loss has been at the fore.

When Connor was sick, I was able to be there; holding him, supporting him, taking him home or out for the day. He was allowed visitors and hundreds of people attended his funeral. Coronavirus has changed all of those factors and has left families even more devastated.

Parents can no longer hug their child who may be ill from Covid-19, they cannot comfort them nor receive the physical and emotional support from others in the same way we would have previously. 

The Government needs to invest in charities and agencies that complete the value support work, such as Sue Ryder (and other hospices), Winston Wish and specific therapeutic bereavement support.

Many of these organisations receive very little, if any, finances from the Government – yet they are needed the most, particularly now.

If you know someone who has lost a child, give them time, understanding and patience – grieving can take years to cope with at the best of times. Do not ever stop them talking about their dead children. They would never stop you talking about your living children.

A bereaved parent needs to know that their child’s life mattered, that they won’t be forgotten. I still celebrate Connor’s birthdays and imagine what he would have been like.

There were a handful of people who showed themselves, who did not shy away, who embraced me and my daughter, Connor’s sister, while struggling with their own loss. And, of course, the professionals who allowed me the space to grieve.

I also turned to other avenues, such as running. The gratitude I have for being able to put one foot in front of the other and to be in the great outdoors has been a massive help in moving me through my pain. I have also completed the first year of my master’s degree in applied positive psychology and have found it life-changing.

Above all, my daughter is my inspiration for life – she is an amazing young woman. Our relationship has always been strong but we have been brought closer together since Connor has died.

English language doesn’t have a word for bereaved parents or bereaved siblings, like they do for those who have lost a spouse, or both parents.

It’s almost as if our forefathers made an active choice for us to not talk about the death of a child. Their name, their life, their death becomes a bad word – one that should be left unspoken.

But I will never stop talking about my son. I will keep telling stories about Connor to keep him alive in my heart and mind, forever.

Complete Article HERE!

Reflections on getting ready to die

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So far, I’m healthy, thank Pan, for a man my age, and except for a few non-life-threatening annoyances of long years’ use, my body seems to be holding up OK, and I’m grateful for what luck I’ve had. But I know that could change any minute. The stranger’s cough in some store, the contaminated fingerprint on the copier, the idiot with his nose outside his mask, who knows, you could get infected almost anywhere, via all sorts of sneaky vectors, and there really is no safe place.

So it’s a good time to think about contingencies, just in case. And the most inevitable and uncertain roll of the dice is death. If you catch COVID-19, it’s a long shot that it will kill you—unless of course you’re old, or fat, or already sick with something, or possibly young and otherwise healthy, nobody’s really sure why it takes some people—but this seems to me as good a time as any to get ready to die.

One thing I’ve always loved about gospel music is its existential urgency: You’re going to die and you’d better be ready to meet your Maker. If you believe in sin, you’ve sinned and it’s time to atone. You wish you could apologize to whomever you’ve hurt. And if you go down that road of remorse you’re in danger of being drawn into a black hole of a past you’ll never escape from. But maybe there’s a way to exorcise those bad deeds, some ritual—confession or spirit dance or primal scream—that can cleanse your soul of the shame.

Or you can forgive yourself for being human and screwing up repeatedly as nearly everyone does. You can accept your imperfections in whatever time is left, and maybe there’s time to correct them in your behavior and in relations with others. Maybe it’s not too late to change for the better.

There’s nothing like a deadline as a motivator, and the ultimate deadline is the greatest motivator of all because there is no grace period or overtime or extra innings. Death is a dead end. So you’d better get it together before it’s a done deal.

Thinking you could die any day brings your surroundings into sharper focus. More and more I appreciate the small pleasures—the sight of pelicans, smell of jasmine, sound of a song in the car, tactile feel of addressing an envelope and selecting the perfect stamp for the recipient, taste of the pasta sauce made from ingredients bought at the farmers market, friendly twinkle in the eye of the farmer as she hands you your change and you exchange masked thank-yous—and I seem to find them everywhere now that I’m about to be bereft of everything. When you’re about to lose it all, you realize what a gift it has all been.

So from imminent loss of everything comes a suddenly discovered abundance of what could never be kept anyway. As W.S. Merwin put it: “What you do not have you find everywhere.” Or Gary Young, my old friend who barely survived cancer in his 20s: “I’ve never felt more alive than when I was dying.” According to one biographer, the last words of Jorge Luis Borges were: “This is the happiest day of my life.” Or Page Smith in his final minutes: “It’s been a great life.”

These expressions of appreciation, of gratitude, of relief from all the suffering and distractions, remind me of how I’d like to live the rest of my days, no matter how much or how little time I have left. I don’t know whether time can be “wasted”—but I want to make the best possible use of it while I have the chance. That means not clicking on every link or trying to be liked or aspiring to other people’s expectations. Being ready to die means being ready to tell the truth. Any words you say could be your last.

Complete Article HERE!