What happens as we die?

As with birth, dying is a process. How does it unfold? Can you prepare for it? And why should you keep talking to a dying person even if they don’t talk back?

By Sophie Aubrey

We’re born, we live, we die. Few things are so concrete. And yet, while we swap countless stories about the start of life, the end is a subject we’re less inclined to talk about.

Conversations about death – what it is, what it looks like – are scarce until we suddenly face it head on, often for the first time with the loss of a loved one.

“We hold a lot of anxiety about what death means and I think that’s just part of the human experience,” says Associate Professor Mark Boughey, director of palliative medicine at Melbourne’s St Vincent’s Hospital. “Some people just really push it away and don’t think about it until it’s immediately in front of them.”

But it doesn’t need to be this way, he says.

“The more people engage and understand death and know where it’s heading … the better prepared the person is to be able to let go to the process, and the better prepared the family is to reconcile with it, for a more peaceful death.”

Of course, not everyone ends up in palliative care or even in a hospital. For some people, death can be shockingly sudden, as in an accident or from a cardiac arrest or massive stroke. Death can follow a brief decline, as with some cancers; or a prolonged one, as with frailty; or it can come after a series of serious episodes, such as heart failure. And different illnesses, such as dementia and cancer, can also cause particular symptoms prior to death.

But there are key physical processes that are commonly experienced by many people as they die – whether from “old age”, or indeed from cancer, or even following a major physical trauma.

What is the process of dying? How can you prepare for it? And how should you be with someone who is nearing the end of their life?

What are the earliest signs a person is going to die?

The point of no return, when a person begins deteriorating towards their final breath, can start weeks or months before someone dies.

Professor Boughey says refractory symptoms – stubborn and irreversible despite medical treatment – offer the earliest signs that the dying process is beginning: breathlessness, severe appetite and weight loss, fluid retention, fatigue, drowsiness, delirium, jaundice and nausea, and an overall drop in physical function.

Simple actions, such as going from a bed to a chair, can become exhausting. A dying person often starts to withdraw from the news, some activities and other people, to talk less or have trouble with conversation, and to sleep more.

This all ties in with a drop in energy levels caused by a deterioration in the body’s brain function and metabolic processes.

Predicting exactly when a person will die is, of course, nearly impossible and depends on factors ranging from the health issues they have to whether they are choosing to accept more medical interventions.

“The journey for everyone towards dying is so variable,” Professor Boughey says.

What happens in someone’s final days?

As the body continues to wind down, various other reflexes and functions will also slow. A dying person will become progressively more fatigued, their sleep-wake patterns more random, their coughing and swallowing reflexes slower. They will start to respond less to verbal commands and gentle touch.

Reduced blood flow to the brain or chemical imbalances can also cause a dying person to become disoriented, confused or detached from reality and time. Visions or hallucinations often come into play.

“A lot of people have hallucinations or dreams where they see loved ones,” Professor Boughey says. “It’s a real signal that, even if we can’t see they’re dying, they might be.”

But Professor Boughey says the hallucinations often help a person die more peacefully so it’s best not to “correct” them. “Visions, especially of long-gone loved ones, can be comforting.”

Instead of simply sleeping more, the person’s consciousness may begin to fluctuate, making them nearly impossible to wake at times, even when there is a lot of stimulation around them.

With the slowing in blood circulation, body temperature can begin to seesaw, so a person can be cool to the touch at one point and then hot later on.

Their senses of taste and smell diminish. “People become no longer interested in eating … they physically don’t want to,” Professor Boughey says.

This means urine and bowel movements become less frequent, and urine will be much darker than usual due to lower fluid intake. Some people might start to experience incontinence as muscles deteriorate but absorbent pads and sheets help minimise discomfort.

What happens when death is just hours or minutes away?

As death nears, it’s very common for a person’s breathing to change, sometimes slowing, other times speeding up or becoming noisy and shallow. The changes are triggered by reduction in blood flow, and they’re not painful.

Some people will experience a gurgle-like “death rattle”. “It’s really some secretions sitting in the back of the throat, and the body can no longer shift them,” Professor Boughey says.

An irregular breathing pattern known as Cheyne-Stokes is also often seen in people approaching death: taking one or several breaths followed by a long pause with no breathing at all, then another breath.

“It doesn’t happen to everybody, but it happens in the last hours of life and indicates dying is really front and centre. It usually happens when someone is profoundly unconscious,” Professor Boughey says.

Restlessness affects nearly half of all people who are dying. “The confusion [experienced earlier] can cause restlessness right at the end of life,” Professor Boughey says. “It’s just the natural physiology, the brain is trying to keep functioning.”

Circulation changes also mean a person’s heartbeat becomes fainter while their skin can become mottled or pale grey-blue, particularly on the knees, feet and hands.

Professor Boughey says more perspiration or clamminess may be present, and a person’s eyes can begin to tear or appear glazed over.

Gradually, the person drifts in and out or slips into complete unconsciousness.

How long does dying take? Is it painful?

UNSW Professor of Intensive Care Ken Hillman says when he is treating someone who is going to die, one of the first questions he is inevitably asked is how long the person has to live.

“That is such a difficult question to answer with accuracy. I always put a rider at the end saying it’s unpredictable,” he says.

“Even when we stop treatment, the body can draw on reserves we didn’t know it had. They might live another day, or two days, or two weeks. All we know is, in long-term speaking, they certainly are going to die very soon.”

But he stresses that most expected deaths are not painful. “You gradually become confused, you lose your level of consciousness, and you fade away.”

Should there be any pain, it is relieved with medications such as morphine, which do not interfere with natural dying processes.

“If there is any sign of pain or discomfort, we would always reassure relatives and carers that they will die with dignity, that we don’t stop caring, that we know how to treat it and we continue treatment.”

Professor Boughey agrees, saying the pain instead tends to sit with the loved ones.

“For a dying person there can be a real sense of readiness, like they’re in this safe cocoon, in the last day or two of life.”

Professor Boughey believes there is an element of “letting go” to death.

“We see situations where people seem to hang on for certain things to occur, or to see somebody significant, which then allows them to let go,” he says.

“I’ve seen someone talk to a sibling overseas and then they put the phone down and die.”

How can you ‘prepare’ for death?

Firstly, there is your frame of mind. In thinking about death, it helps to compare it to birth, Professor Boughey says.

“The time of dying is like birth, it can happen over a day or two, but it’s actually the time leading up to it that is the most critical part of the equation,” he says.

With birth, what happens in the nine months leading to the day a baby is born – from the doctor’s appointments to the birth classes – can make a huge difference. And Professor Boughey says it’s “absolutely similar” when someone is facing the end of life.

To Professor Hillman, better understanding the dying process can help us stop treating death as a medical problem to be fixed, and instead as an inevitability that should be as comfortable and peaceful as possible.

Then there are some practicalities to discuss. Seventy per cent of Australians would prefer to die at home but, according to a 2018 Productivity Commission report, less than 10 per cent do. Instead, about half die in hospitals, ending up there because of an illness triggered by disease or age-related frailty (a small percentage die in accident and emergency departments). Another third die in residential aged care, according to data from the Australian Institute of Health and Welfare.

Professor Hillman believes death is over-medicalised, particularly in old age, and he urges families to acknowledge when a loved one is dying and to discuss their wishes: where they want to die, whether they want medical interventions, what they don’t want to happen.

“[Discussing this] can empower people to make their own decisions about how they die,” says Professor Hillman.

Palliative Care Nurses Australia president Jane Phillips says someone’s end-of-life preferences should be understood early but also revisited throughout the dying process as things can change. With the right support systems in place, dying at home can be an option.

“People are not being asked enough where they want to be cared for and where they want to die,” Professor Phillips says. “One of the most important things for families and patients is to have conversations about what their care preferences are.”

How can you help a loved one in their final hours?

Studies show that hearing is the last sense to fade, so people are urged to keep talking calmly and reassuringly to a dying person as it can bring great comfort even if they do not appear to be responding.

“Many people will be unconscious, not able to be roused – but be mindful they can still hear,” Professor Phillips says.

“As a nurse caring for the person, I let them know when I’m there, when I’m about to touch them, I keep talking to them. And I would advise the same to the family as well.”

On his ICU ward, Professor Hillman encourages relatives to “not be afraid of the person on all these machines”.

“Sit next to them, hold their hands, stroke their forehead, talk to them about their garden and pets and assume they are listening,” he says.

Remember that while the physical or mental changes can be distressing to observe, they’re not generally troubling for the person dying. Once families accept this, they can focus on being with their dying loved one.

Professor Boughey says people should think about how the person would habitually like them to act.

“What would you normally do when you’re caring for your loved one? If you like to hold and touch and communicate, do what you would normally do,” he says.

Other things that can comfort a dying person are playing their favourite music, sharing memories, moistening their mouth if it becomes dry, covering them with light blankets if they get cold or damp cloths if they feel hot, keeping the room air fresh, repositioning pillows if they get uncomfortable and gently massaging them. These gestures are simple but their significance should not be underestimated.

What is the moment of death?

In Australia, the moment of death is defined as when either blood circulation or brain function irreversibly cease in a person. Both will eventually happen when someone dies, it’s just a matter of what happens first.

Brain death is less common, and occurs after the brain has been so badly damaged that it swells, cutting off blood flow, and permanently stops, for example following a head injury or a stroke.

The more widespread type of death is circulatory death, where the heart comes to a standstill.

After circulation ceases, the brain then becomes deprived of oxygenated blood and stops functioning.

The precise time it takes for this to happen depends on an individual’s prior condition, says intensive care specialist Dr Matthew Anstey, a clinical senior lecturer at University of Western Australia.

“Let’s say you start slowly getting worse and worse, where your blood pressure is gradually falling before it stops, in that situation your brain is vulnerable already [from reduced blood flow], so it won’t take much to stop the brain,” Dr Anstey says.

“But if it’s a sudden cardiac arrest, the brain could go on a bit longer. It can take a minute or two minutes for brain cells to die when they have no blood flow.”

This means, on some level, the brain remains momentarily active after a circulatory death. And while research in this space is ongoing, Dr Anstey does not believe people would be conscious at this point.

“There is a difference between consciousness and some degree of cellular function,” he says. “I think consciousness is a very complicated higher-order function.”

Cells in other organs – such as the liver and kidneys – are comparatively more resilient and can survive longer without oxygen, Dr Anstey says. This is essential for organ donation, as the organs can remain viable hours after death.

In a palliative care setting, Professor Boughey says the brain usually becomes inactive around the same time as the heart.

But he says that, ultimately, it is the brain’s gradual switching off of various processes – including breathing and circulation – that leads to most deaths.

“Your whole metabolic system is run out of the brain… [It is] directing everything.”

He says it’s why sometimes, just before death, a person can snap into a moment of clarity where they say something to their family. “It can be very profound … it’s like the brain trying one more time.”

What does a dead person look like?

“There is a perceptible change between the living and dying,” Professor Boughey says.

“Often people are watching the breathing and don’t see it. But there is this change where the body no longer is in the presence of the living. It’s still, its colour changes. Things just stop. And it’s usually very, very gentle. It’s not dramatic. I reassure families of that beforehand.”

A typical sign that death has just happened, apart from an absence of breathing and heartbeat, is fixed pupils, which indicate no brain activity. A person’s eyelids may also be half-open, their skin may be pale and waxy-looking, and their mouth may fall open as the jaw relaxes.

Professor Boughey says that only very occasionally will there be an unpleasant occurrence, such as a person vomiting or releasing their bowels but, in most cases, death is peaceful.

And while most loved ones want to be present when death occurs, Professor Boughey says it’s important not to feel guilty if you’re not because it can sometimes happen very suddenly. What’s more important is being present during the lead-up.

What happens next?

Once a person dies, a medical professional must verify the death and sign a certificate confirming it.

“It’s absolutely critical for the family to see … because it signals very clearly the person has died,” says Professor Boughey. “The family may not have started grieving until that point.”

In some cases, organ and tissue donation occurs, but only if the person is eligible and wished to do so. The complexity of the process means it usually only happens out of an intensive care ward.

Professor Boughey stresses that an expected death is not an emergency – police and paramedics don’t need to be called.

After the doctor’s certificate is issued, a funeral company takes the dead person into their care and collects the information needed to register the death. They can also help with newspaper notices or flowers.

But all of this does not need to happen right away, Professor Boughey says. Do what feels right. The moments after death can be tranquil, and you may just want to sit with the person. Or you might want to call others to come, or fulfil cultural wishes.

“There is no reason to take the body away suddenly,” Professor Boughey says.

You might feel despair, you might feel numb, you might feel relief. There is no right or wrong way to feel. As loved ones move through the grieving process, they are reminded support is available – be it from friends, family or health professionals.

Complete Article HERE!

Living with death

Joan Pillsbury attaches the supports for the handles from the inside of the coffin during the coffin building workshop last month.

By MELINA BOURDEAU

The only guarantees in life are taxation and death, according to Benjamin Franklin. For Ellen Arrison of New Salem, that reality is literally sitting inside her living room right now — in the form of a rectangular pinewood coffin.

“I hope it has lots of coffee rings and wine stains on it before I have to use it,” said Arrison, who was one of a dozen participants who took part in a recent coffin-making workshop in Greenfield that was co-sponsored by was co-sponsored by Green Burial Massachusetts and the Funeral Consumers Alliance of Western Massachusetts. According to Arrison, an experienced hospice nurse, making a coffin “made death more real” and caused her to confront end-of-life questions — a subject that she says is taboo in western culture.

“We’re all going to die, but we don’t believe it. Part of life is appreciating the time there is,” said Arrison. Housing the coffin in her living room serves as “a conversation starter” and is a constant reminder of her own mortality. She intends to keep it there until it needs to be used for its intended purpose.

“I knew I wanted a green burial, so that’s part of it too,” Arrison said. “I live in a rural area and I’d like to be buried in my own land. I love it and I’ve spent a lot of time and energy and money — I’d like to give back to the land.”

The coffin making workshop, which was led by Joan Pillsbury of Greenfield, treasurer of Green Burial Massachusetts, a nonprofit advocacy group, cost $210 and covered about two to three hours. Participants made “quick coffins” with pine provided by carpenter Chuck Lakin of Waterville, Maine, who also provided the tools and oversaw the construction process, Pillsbury said. The workshop drew people from varied walks of life.

“Everyone’s skilled were varied. Some people had no experience with tools, some could have finished the project in an hour,” Lakin said. “I tried to explain and guide people through the process.”

Afterward, the group, like pallbearers, “made a ceremony out of carrying their coffins to their vehicles,” Lakin said.“Everyone would carry a coffin to someone’s car, then that person would drive and park. Then they would do the same thing with someone else’s coffin. It must have been a sight for someone just passing by.”

Don Joralemon, a retired Smith College anthropology professor, is keeping his coffin in the basement of his home in Conway. He said he decided to make a coffin because he “isn’t a fan of the funeral industry” and he wanted to take the burden away from his family when the time comes.

“I hope to make use of it in land in Conway,” Joralemon said. “It’s a simple process. You have to get permission from the Board of Health and there needs to be a permanent indication that there’s a grave on the property.”
He said the experience of building the coffin was wonderful and he would recommend it to anyone.

The craft of coffin making

Before making coffins, Lakin, who said he’s been a woodworker since he was 26 when he got out of the United States Navy, made a living as a librarian at Colby College. When his father was dying, Lakin said he spent the last six weeks of his life surrounded by family and loved ones. It was a very personal and moving experience, Lakin said.

“He was in his own bed with each of his family touching him when he passed,” he recalled.

After, his family called a funeral home and his father’s body was taken away.

“He was hauled away and I hated it because it had been so personal and all of a sudden he was gone,” said Lakin.

Later on, Lakin read a manual about how to take care of a loved one after they have died. The book included instruction on how to wash, present and bury someone after death. Before, Lakin noted, “I hadn’t thought of what was next.”

“That’s when I began talking about these things with people,” he continued. “Not to convince them of what to do, but to provide information so they can have the experience I wanted to have.”

He decided to try his hand at making coffins so that others wouldn’t experience the emptiness that he felt. These days, Lakin says he makes between three and five coffins a year and uses the money he makes to travel to events throughout Maine and talk about the options people have funerals.

“People have no idea they have as many options as they do,” Lakin said.

He met Pillsbury at one of these events, the annual Funeral Consumers of Maine, and agreed to hold the coffin-making workshop. If there was enough interest, Lakin says he’d be willing to put on another workshop in the future.

A healing endeavor

For Lakin and the workshop participants, building the coffins was a way of confronting their mortality head-on. According to Lakin, Americans are proficient at ignoring the reality that they are going to die someday.

“You have to recognize and admit it is going to happen,” Lakin said. “It’s a natural part of life; there’s a transition in and there’s a transition out. It happens to everyone. … Your attitude toward it and preparation makes all the difference. It turns what could be a tragedy into a spiritual experience.”

Lakin was speaking from personal experience. When his wife, Penny, died in 2017, Lakin held the funeral at their home. He said he wife was in their house for the last five weeks of her life and, for the duration of those weeks, it was like a “long party.”

“We have a good support group, and we told them to stop by anytime,” Lakin said. “Sometimes there would be 12 people in the living room.”

After her death, Lakin said that two of her best friends anointed and dressed the body. Lakin built her coffin and invited guests to come over and draw and write messages on it. Then after four days, which included a time to display the body, they held a burial ceremony followed by dinner at her favorite restaurant.

“We offered people the ability to do something physical — writing or drawing something — to help them (grieve),” said Lakin. “They were grieving and I don’t think they knew what they were going through.”

Arrison had a similar experience with a home burial as a child after a friend’s grandfather died.

“He was laid out in the living room for three days,” Arrison said, noting, “I, personally, find the idea of viewing a body when it’s presented in an artificial way macabre. It makes it seem disconnected in some way.”

Green burials and the death positive movement

The term “death positive” might seem like an oxymoron, but those who are a part of a growing movement of the same name say it’s an effort to demystify mortality in American culture.

Joralemon, the retired Smith professor who attended the workshop, covered the topic in his book titled “Mortal Dilemmas: The Troubled Landscape of Death in America.” Americans have made death into a taboo subject, he says. But it hasn’t always been that way.

“It didn’t use to be so bad. Deaths would happen in the home. The body would be washed, coffins would be made by a carpenter. It wasn’t a surprise or taboo,” Joralemon said. “Then the profession of funeral director was made when more people were dying in hospitals.”

In contrast to culture’s perspectives on death, he said it’s imperative that people confront their own mortality.

“Life is a transformation and death is part of it,” Joralemon said. “Bit by bit, hopefully, we can start to recover the comfort with death and celebrate the moments before that.”

Along with the workshop, Arrison noted that her experience as a nurse has helped normalize the idea of death.

“I did hospice care for some time and I’ve been with people in the process of dying,” Arrison said. “It was valuable and a privilege. It also makes the inevitability (of death) more real. It’s familiar when it’s happening to someone else. I think that the experience is not difficult or frightening, it’s interesting and curious.”

“You get a health care proxy, a will, build your coffin,” Arrison said. “These activities take some of the dread out of it. It normalizes it and you appreciate the time you have — it’s a procrastination deterrent.”

More than preparation for the end of her life, knowing that she’s going to die someday “softens my heart,” Arrison said. “I know that every person is going to die, too. It enhances the experience of life. I have a more positive perspective. It’s actually life-affirming.”

Lakin said he learned about the term “death positive” from Caitlin Doughty, a mortician and funeral home director in Los Angeles, California, who made videos answering questions about death and dying.

“She started by answering people’s basic questions about death, then she ran out of common questions and had to look for topics,” Lakin said. “I found it informative and entertaining because she has a sarcastic sense of humor. I don’t think she coined the term ‘death positive,’ but I think she popularized it.”

He said the death positive movement coincides with a similar trend called the “green burial movement.” Both stress a more personal quality to end-of-life care.

Green Burial Massachusetts is a grassroots organization that educates people about green burials — where a person is not embalmed and put into a coffin or shroud that will biodegrade along with the body. The person is buried about 3 ½ feet in the ground, where aerobic decomposition can occur.

“A burial will happen on a piece of land 3 ½ feet under the ground, where the person isn’t embalmed and there’s no concrete,” Lakin said. “Everything is biodegradable — the person can be buried in a shroud, a coffin, a cardboard box. They also typically use stone from the area as monuments, engraved with the names and dates.”

Joralemon said his philosophies align with the green burial movement because “this is what we did for millennia and there’s no reason not to set aside land for people who would like a green burial.”

Complete Article HERE!

3 Benefits Of Thinking About Your Mortality At Least Once A Day

By Shoshana Ungerleider, M.D.

As a culture, Americans—more often than not—have a tendency to avoid thinking and talking about death and dying. Yet pondering our mortality can have a profound impact on our lives.

Our health care system is set up with a single, default pathway for all medical care: aggressive, invasive treatment, no matter how old or how sick you are. For some people, this makes perfect sense and can save lives. For others, a different approach to care is required. But it starts with having a relationship with our own mortality and reflecting on what matters most in our own lives. I have seen far too many people suffer by receiving treatment that is not in line with their goals and values.

In our modern era of fast-paced life, constant digital connectedness, and a culture striving to be “doing” all the time, it’s easy to get caught up in things that don’t matter. If we can reflect on the bigger picture in life, the preciousness of each moment, we can more easily let go of things that aren’t important. I believe there are three key benefits to thinking about our mortality at least once a day:

1. You’ll be motivated to leave a legacy.

Ask yourself, what do you want to leave behind? The idea of legacy awareness is a way to connect with our own mortality as it relates to our work, loved ones, and creative endeavors. If we think about legacy as a means to transcend death, we may be more likely to invest in our health and personal development throughout life. 

Artists, for example, live on long after they’re gone thanks to their creative legacy. That’s just one way of forming a legacy. Whether you are creating art, giving back to your community, raising a family, or making a positive impact on the lives of others, these are all powerful ways to leave a legacy for generations to come.

2. Life will instantly feel more precious.

Too much of a good thing decreases its value. Life is precious. It’s also temporary. Even when you’re young and healthy, your life could end unexpectedly at any time. Recognizing that life is fleeting helps us find joy and meaning in the small things—sunset and sunrise, a smile on your child’s face, a tree in the park—that sometimes get lost in the day-to-day. The people in your life can take on a new value because we realize that their lives are also temporary.

3. You’ll learn not to sweat the small stuff.

Thinking about our mortality can serve as inspiration to think more holistically about what it means to live our best life. In other words, it can move us to exercise and eat well because we only get one body. And at the same time, it’s an invaluable reminder that we only get one life, and we better enjoy it. So many of us are on a quest to find balance in our lives and define our own priorities. Remembering that we have this one life to live can help when weighing where we want to put our energy and attention.

Countless psychological studies have shown that a recognition of our own eventual ending can allow us to live a richer life—one filled with gratitude, presence of mind, and happiness. As you go through the checklist of factors contributing to your overall well-being—getting quality sleep, eating healthy food, exercising regularly, and sustaining meaningful relationships—make sure that forming a relationship with your own mortality is high on the list.

No one knew how important this practice was better than Apple’s Steve Jobs who, during his 2005 commencement speech at Stanford University, said, “Almost everything—all external expectations, all pride, all fear of embarrassment or failure—these things just fall away in the face of death, leaving only what is truly important.”

If contemplating your mortality triggers fear, consider this.

Does thinking about our own death trigger fear? According to the 2017 Survey of American Fears conducted by Chapman University, 20.3% of Americans are “afraid” or “very afraid” of dying. While for some, fear of death is healthy as it makes us more cautious (such as wearing seat belts and minimizing high-risk behaviors), some people may also have an unhealthy fear of dying, which interferes with their daily life.

Psychologist and spirituality expert Stephen Taylor looked at those who lost loved ones, and many tend to have a more accepting attitude toward death. This may result from “post-traumatic growth,” or personal growth from trauma. Others suggest that much of our fear of death stems from not wanting to lose the things we’ve built up (i.e., relationships, possessions, or status). By letting go (even a little) of fierce attachments, it can allow for valuable shifts in perspective and benefits to our well-being. 

My friend and colleague, B.J. Miller, M.D., puts this in a different light. “Death is not at odds with living. You can’t get one without the other.” Whether we like it or not, death is always present. Connecting to the fact that life is defined by the fact that it will end one day will allow you to live more fully, experience deeper relationships, and provide new meaning to your days.

Next time you have the opportunity to reflect on your mortality, think about how it might enrich your life today.

Complete Article HERE!

Five Wishes

A Simple Tool to Write Your Living Will

By Taylor Schulte, CFP,

End-of-life planning is more than just what kind of care you want in your final days. It’s about such personal choices as who you want with you when the time comes and what will bring you and your family comfort and peace.

As a financial adviser, one thing I do is assist my clients with end-of-life documents that determine how their estates will be handled upon death. But there’s more to end-of-life planning than deciding who gets what and minimizing estate and inheritance taxes. There are also the emotional aspects of death to deal with … and those details can be more important than anything else.

Want proof? Ask anyone on their deathbed what they really want people to know.

Chances are good their answers will have nothing to do with the S&P 500 or the size of their portfolio. Instead, final thoughts tend to be about loved ones, missed opportunities and forgiveness for things that cannot be undone.

This is where Five Wishes comes in and why I interviewed Paul Malley — president of Aging with Dignity, the organization that created Five Wishes — on the Stay Wealthy Retirement Podcast.

In case you’ve never heard of it, Five Wishes is a document that lets you decide your final wishes as well as how you’ll be treated if you ever become seriously ill. The main point of Five Wishes is letting you make decisions about the end of your life just in case you cannot make them yourself. After all, you may wind up knowing months ahead of time that you’re at death’s door, but the worst can also happen in the blink of an eye.

How Does Five Wishes Work?

Think of it as a living will — or as a conversation piece you can use to collect all your end-of-life wishes in a single place. Five Wishes is a legal document in all states but eight. Alabama, Indiana, Kansas, New Hampshire, Ohio, Oregon, Texas and Utah all require their own official documentation.

Once you get started filling out your own Five Wishes document, you’ll have many important decisions to make. For example, you’ll be asked to name someone you trust to act as your health care agent, but you’ll also be asked to leave instructions for the types of medical care you want (and don’t want).

In addition, you get to make decisions surrounding your comfort, your dignity and other requests you have — no matter how specific they are.

Paul Malley told me during our interview that often the questions that seem the least important wind up impacting families most. Examples include questions regarding pain management and what it takes for someone to feel comfortable, clean and warm.

For example, would you rather die at home if given the choice? Do you want music playing? Do you want people with you?

“Those little things may sound small, but I can tell you from the messages we receive that this is where the true gift is,” says Malley.

Five Wishes in Practice

Malley says he has heard many stories over the years that have proven just how important having a living will is, but one that comes to mind involves a gentleman who had a stroke and became incapacitated overnight. After speaking to the wife of this man (let’s call her Mrs. Smith) once final arrangements were made, Malley learned all the different ways Five Wishes made Mr. Smith’s passing more bearable.

After her husband’s first day in intensive care, for example, Mrs. Smith noticed in her husband’s Five Wishes profile that he wanted pictures of his grandchildren in the room. Reading that detail, she suddenly felt good about leaving him long enough to go home and get cleaned up, knowing she could bring back all the family photos he wanted to be surrounded with.

At one point, there was a disagreement among her children over whether their father should be taken off life support. But thanks to the details in the Five Wishes document, the entire family learned together that he didn’t want to remain on life support if doctors were sure he would never “come back.”

Thanks to Five Wishes, they all left the room in agreement to do “what dad wanted” — a result Mrs. Smith says would have been unlikely if her husband hadn’t formally expressed his wishes himself.

Finally, Mr. Smith had taken the time to note in his living will that his family members should make peace with each other before he died. The couple’s two sons spoke after a long-term estrangement as a result, which brought Mrs. Smith an immense amount of peace at a very trying time. Not only did she get to see her sons begin speaking again, but she knew her husband’s final wishes were being fulfilled.

This is a good example of how a living will can be much more than a legal document — it can be something that “hits in the heart and soul,” says Malley.

In the end, Five Wishes helps us understand that life is about a lot more than money.

How to Get Started with Five Wishes

If you’re on board with creating a legal document that contains this important information, there’s no reason to delay creating a Five Wishes document as soon as you can — and no matter your age. Unfortunately, it can be difficult to get your family to talk about death in any capacity when they’re just not ready to or have no desire to.

Malley says sometimes it takes several tries for people to get their parents or spouse to make end-of-life decisions regarding their health care, their comfort and their final wishes — but it’s important enough that it’s worth trying as many times as it takes.

If you’re worried about how your family members will react if you broach the subject, consider filling out your own Five Wishes document then asking your family members to talk it over with you. This may prompt them to think over what they will want when the time comes, and it can be a “softer approach” that makes it easier to bring up matters as sensitive as death.

Whether for yourself or someone else, you can access a few different versions of Five Wishes — a hard copy format or an online version. Both options are $5 each, although you can order Five Wishes for as little as $1 per document with a minimum order of 25.

Malley says that, if you already have an advance directive set up, you can use Five Wishes in conjunction with your other documents. Still, you should take the time to go over all your end-of-life information, but especially if your situation has changed over the years — if you were divorced, remarried or your health has deteriorated.

If you live in a state where Five Wishes isn’t recognized as a legal document, you can still fill it out and use it alongside with your state’s form. Fives Wishes even offers specific instructions on how to use both your state form and this document successfully on their FAQ page.

The Bottom Line

At the end of the day, people should be able to explain their end of life wishes in their own words, says Malley. They should be given the time and space to decide how they want the end of their life to look, what kind of care they want to receive, and who they want by their side.

When you don’t make these decisions ahead of time, you’re agreeing to let the chips fall where they may. This may or may not work in your favor, but one thing is for certain — you won’t get a second chance.

Complete Article HERE!

Death and dying – talking to your loved ones

By Karen Kaslow

Death and dying are not common topics of family conversation in American culture. Even when a loved one is critically ill, many families struggle with how and when to share their thoughts and feelings about death and dying with each other.

Hospice workers are in a unique position to interact with families as the process of dying is experienced. I recently spoke with staff members from a couple of local hospice agencies who offered insight and perspective related to individual and family responses to death and dying.

One response that these professionals regularly encounter is a request by the family to not tell the patient that he/she is dying. Sometimes it’s the patient asking the professional to not tell the family that he/she is dying. The professional is asked to not wear a name badge that might say “hospice” on it, and not to introduce himself/herself as from a hospice organization.

Families may react in this manner for several reasons:

  • Fear that their loved one will respond to the news by “giving up”
  • Personal difficulty accepting the circumstances and a “if we don’t talk about it, then it isn’t real” belief
  • Lack of time or energy to have emotionally intense discussions due to the pressures of physical caregiving, financial concerns, job responsibilities, etc.
  • A desire to avoid an appearance of weakness or vulnerability

Although family members may believe they are protecting their loved ones from emotional stress by not talking about death, avoiding these conversations may actually create additional heartache for everyone due to an inability to pursue individual goals for care and experience closure. Even when families tried to hide the fact, in the majority of cases experienced by these hospice workers, their patients who were alert and oriented were aware that they were dying.

One nurse I spoke with identified what she referred to as “the tasks of dying.” When people are aware that the end of life is approaching, their emotional and spiritual focus may change and certain activities may have greater importance, such as:

  • Apologizing for past mistakes
  • Forgiving others for uncomfortable situations/relationships
  • Thanking family members, friends and others who are significant
  • Sharing love
  • Saying “goodbye”

The significance of these tasks was acutely demonstrated by one couple who were receiving services from this nurse. The wife was at the very end of her life, in fact, her physicians could not understand why she had not died days beforehand. Initially, the hospice team believed she was waiting for their daughter to arrive, however, she continued to cling to life despite the daughter’s presence.

The hospice nurse finally asked the husband if he was aware of any unresolved issue for his wife, and he immediately broke down. Many years prior, he had an affair. His wife knew of the affair and they remained married, but they never spoke about it, moving forward as if it had never occurred. With encouragement from the nurse, he acknowledged this situation and requested forgiveness from his wife, and she died within 20 minutes.

How does one initiate conversations about closure and end of life goals for care? For families who are reluctant to tell a loved one that he/she is dying, a question that might be helpful is “What is the worst case scenario if you tell your loved one?”

When speaking with the individual who is dying, recognize that one important concept for those who are near the end of life is legacy. People want to know that their lives mattered. Asking “What are you most proud of?” or sharing an accomplishment of the individual that made an impression on you can open the door to deeper dialogue.

For questions that can help guide the development of goals for care, consideration should be given to not only specific medical treatments, but also how those medical treatments will influence daily life. Defining values with questions such as “What is a good death?” and “Is there something that you want to accomplish?” can help guide care decisions.

For additional reading on this topic visit: https://online.nursing.georgetown.edu/blog/talking-about-end-of-life-care.

Complete Article HERE!

How to Cope with Anticipatory Grief at Work

By Sabina Nawaz

At the end of a hectic travel season, I was looking forward to a four-day weekend. Right before boarding the plane for home, my phone rang. It was my mother’s assisted living facility. My stomach always tightened when their number displayed on my phone, but usually it would quickly ease. Not this time. Instead of the routine, “Your mother’s fine; we’re calling to inform you about…” this time the nurse said, “Your mother has stopped eating.”

My mother was at the end of her 15-year battle with Alzheimer’s disease and her life. Mom, who used to be an English professor, now had a vocabulary in the single digits. I knew that her quality of life was continually declining. Yet news of her imminent demise was a gut punch. I was thankful for the break in my travel so I could be with her and offer her as much comfort as possible.

Mom and one of my best friends died within a year of each other. In each case, I knew they were going to die, so I shouldn’t have been surprised to experience anticipatory grief — a distinct type of grief different than the grief we experience after a loss. Anticipatory grief involves coming to terms with the impending event, learning how to incorporate it into our reality, and planning our good-byes.

In our society, there is little accommodation for the intensity and duration of the grieving process. The typical length of bereavement leave is three to five days. There is even less institutional support for anticipatory grief. Neither my consulting work with numerous companies nor my research on grief support has uncovered any concrete data on workplace benefits specifically designed to help employees through a season of imminent loss. There are generic family care leave policies in place at about 67% of companies worldwide. A few days of paid leave is typical; additional unpaid leave of several weeks or more is sometimes available. In the U.S., the Family and Medical Leave Act (FMLA) provides for 12 weeks of job-and-benefit protected leave for certain kinds of family care needs. It’s unpaid and restrictions apply — for example, the employer must have 50 or more employees in the location for an employee to be eligible. Other criteria mean that many people don’t have access, and even if it is available, many employees may be financially unable to take unpaid time off.

What’s more, even when a death is expected, the timing is unpredictable, and the process may be prolonged. You likely need or want to continue working for the duration but may require special considerations. Your boss and colleagues know that they’ll cover for you when you attend the funeral, but how much space will they give you prior to the death?

Each person’s circumstances and reactions are different. The death of someone close impacts our personal life and relationships in myriad ways, making extra demands on our time and emotional well-being. In response, we can feel depleted at work. But there are ways that you can better manage both anticipatory grief and your workload, so the process is less draining. The following suggestions reflect my recent dealings at work while experiencing anticipatory grief.

  • Prepare your colleagues. Many people won’t know how to respond when you announce the anticipated death of a loved one. Be explicit about what you’d prefer in your interactions to garner the support you need. After my long weekend, I was scheduled to teach an intense three-day leadership class with a few colleagues. I needed to be fully present for the class participants and my fellow course leaders. I explained my mom’s situation to one of my colleagues, Liz, and asked her to inform the others. I also said that it would help me most if no one mentioned the situation during the class or treated me differently than they normally would. Receiving their empathy when I needed to focus on work would likely make me dissolve into a puddle of tears. In a different setting, talking about an impending loss with an empathetic colleague might be both comfortable and helpful.
  • Create a plan B. You won’t know exactly when you’ll be needed at home — whether it is before or after your loss — so create a backup plan for work. How many people you ask for help will depend on how open you want to be about what you’re going through. Perhaps you choose just one trusted colleague or discuss a plan with your boss or you distribute the load by asking smaller favors of multiple coworkers. For the class I was teaching, Liz and I mapped out how she and our colleagues would divide up the session and handle breakout discussions if I had to leave on short notice.
  • Ask for a second set of eyes. There’s a lot on your mind during major life events. Give yourself space — particularly when you might not be performing at your usual high level. Ask a colleague to double check important items in your work. This could prevent a costly mistake, and your teammates will be glad to have tangible ways to support you. In the weeks leading up to my friend’s and my mom’s deaths, I found myself forgetting many things and making mistakes. In one instance, I arrived for lunch with a friend and realized that I hadn’t brought my wallet. On another occasion, I asked a colleague to review terms in an important work proposal before submitting. He found an error that would have cost me $2,000. Mistakes don’t mean we’ve quit caring about our work; it’s normal to experience brain fog during a crisis.
  • Seek support for your loved one. You may want to be with your loved one all the time, but you may also have to attend to needs at work. It’s easy to feel guilty in your personal situation and inefficient at work — an emotional toll that’s hard to sustain over time. Ask friends to stand in for you so you can concentrate on your task. Trusted friends visited my mom, held her hand, and read to her. It was easier for me to tackle pressing work when I knew loving helpers were reading Wordsworth’s “Daffodils” and Marc Anthony’s speech from Julius Caesar to Mom. And being able to give my full attention to work allowed me to complete it more quickly and return to my mother that much faster.
  • Identify permanent no’s. Expecting someone you care about to die brings your priorities into sharp focus. Suddenly, it’s easier to remove yourself from a noisy distribution list or miss that meeting you wondered why you were attending in the first place. As you say “no” in the short term, take this clarifying opportunity to say no permanently to low-impact activities that have become unquestioned habits.

Loss is inevitable in a life well lived. We accrue abundance through our relationships and experiences, but we also inevitably lose some of our treasured people. Creating space to take care of yourself and your obligations in the face of upcoming losses allows you to manifest a different sort of gain in your life: peace of mind, emotional well-being, and acceptance of loss over the long term.

Complete Article HERE!

A Unique and Affecting Memoir Combines Grief and Mushrooms

By

Toward the end of Long Litt Woon’s unusual memoir, “The Way Through the Woods,” an old friend of the author chastises her for skipping his wedding to go to a mushroom fair.

Although she was one of the fair’s organizers, Long recognizes that her excuse was flimsy and slightly weird. “It had slowly dawned on me,” she writes, “that I was possibly becoming abnormally fixated on mushrooms.”

Indeed. But the larger question in this moving and unexpectedly funny book is not why Long has become obsessed with mushrooms — we have, too, by this point in the narrative — but how and why her obsession has helped her recover from the death of her husband. She makes an eloquent and persuasive case for an original thesis: that “seemingly unrelated subjects such as mushrooms and mourning can, in fact, be connected.”

Books about bereavement can be unbearably painful, like bereavement itself. Grieving is so personal, so all-consuming, so frightening; it can force you close to the edge of insanity. Immersing yourself in someone else’s anguish can feel like voyeurism, an almost obscene violation.

But Long tells the story of finding hope after despair lightly and artfully, with self-effacement and so much gentle good nature that we forgot how sad she (and we) are. Her daring decision to put mushrooms rather than herself at the center of her story speaks to the sort of person, and the sort of narrator, she is.

An anthropologist originally from Malaysia, Long met her husband, Eiolf, while visiting Oslo on a college exchange program. They lived there happily and harmoniously into their mid-50s. “The Way Through the Woods” begins when everything changed, “the day when Eiolf went to work and didn’t come home.” Long is unmoored by a death that was as instant as it was untimely. What should she do now? Should she even remain in Norway?

At a loss, she enrolls in a course called Mushrooms for Beginners, something she and Eiolf had hoped to do together. She finds herself thrust into a world of zealots for whom “talk of fungi crowds out everything else.” (She makes many “mushroom friends” throughout the book, but often has little sense of their non-mushrooming lives.) She immediately sees the humor in the subject.

The mushroom course sponsor, the Greater Oslo Fungi and Useful Plants Society, “sounded like a sister organization to the Norwegian Women’s Hygiene Association,” she writes. “To be honest, I wasn’t sure what constituted a useful plant.” Is there also a society, she wonders, for useless plants?

But “mushroom outings gave me the push I needed to get out of the house and take part in life,” she writes. She prowls the woods for hours, learning how to spot elusive mushroom colonies and to identify dozens of different varieties of mushrooms — which kinds are rare, which are tasty, which are poisonous. She is invited by seasoned enthusiasts to secret mushroom locations known only to them, spots they guard with the fierce jealousy of a squirrel with a private stash of nuts.

We learn that mushrooms considered poisonous in Finland are in some cases considered perfectly edible in France. We hear about a pioneer of 19th-century Norwegian mycology so gripped by obsession that he changed his last name to “Sopp,” which means “mushroom” in Norwegian.

We travel with Long to New York, where she takes a heady tour through Central Park with the late, legendary mycologist Gary Lincoff. They are happily picking mushrooms when a park ranger asks them what is in their basket. Lincoff tells him, reeling off the varieties in Latin.

“It is my duty to inform you that it is forbidden to pick flowers or plants in Central Park,” the ranger says amiably, bidding good-bye. “There, my job is done!”

Soon Long is so keen that she takes, and passes, the Norwegian Mycological Association’s tough exam, becoming a certified mushroom inspector. These volunteers help residents of Oslo who want to pick mushrooms, and who wish not to poison themselves by bringing home the wrong ones.

Receiving her mushroom diploma, Long feels something like euphoria. “I may have even curtsied as it was handed to me, I was so thrilled,” she says. “I think Eiolf would have been proud of me.”

Seeing Long’s capacity for wonder and even contentment in the midst of her sadness feels like seeing tiny shoots of grass peeking from the ash in a landscape stripped bare by fire. Her memoir, beautifully translated from the Norwegian by Barbara J. Haveland, intersperses the story of her mushroom education with details of her emotional journey, each informing the other. She is a fine anthropologist of both.

She describes moments of emptiness, anhedonia and emotional numbness. The moments creep along, then suddenly disappear into black holes, disregarding the rules of chronology. “Grief grinds slowly,” she writes. “It devours all the time it needs.”

We’re used to descriptions of big, convulsive, operatic heartache, but everyday loss around the death of someone you love — the thousands of little moments that are “divine in their banality” — cuts more sharply. Long thinks wistfully of the delight she and her husband used to take in sharing books. “Reading a book is like taking a walk through unknown country. It hurts to think of all the books and all the walks that Eiolf never read, never took and never got to tell me about.”

She and Eiolf loved to cook together. After he died, Long found herself sitting in front of the TV idly spooning mackerel in tomato sauce from a can, a scene that eventually gives way to a glorious chapter full of lovingly described mushroom recipes. “If it were anatomically possible, I would have said that my heart had been dislocated,” she observes. Seeing its gradual restoration to its proper place helps our hearts, too.

At its center, this book poses a familiar, awful existential question. How do you go on living when the person you loved so much — perhaps the person you loved best in the world — is gone?

Everyone must find her own answer. Long’s is as good as any.

“When forced to use my senses in different ways, I gradually ceased to observe my widowhood from the outside and slowly came to grips with my own life,” she says. “And perhaps this just shows how closely linked my two journeys have been — the involuntary excursion into the labyrinth of grief and the utterly voluntary foray into the field of mushrooms.”

Mushroom lovers, she writes, “believe that where there is life, there are mushrooms as well as hope.”

Complete Article HERE!