12/12/17

The Difficult Business of Dying

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The U.S. funeral industry is the most expensive and corporate in the world. Can Americans find a better way to grieve?

By Jess Bergman

In the six years since my father died, I’ve visited the cemetery where his ashes are interred exactly twice—the second time only because of the Jewish tradition of unveiling, where the initial graveside funeral service is followed within a year by a ceremony to uncover and dedicate the headstone. It’s not that returning would be too difficult. It’s more like the reverse: I fear an inability to perform the sadness and solemnity the pilgrimage seems to require. I miss my dad, but the cemetery, nestled alongside the highways and strip malls of suburban South Jersey, fails to evoke him in any meaningful way. It’s a site associated with him only retroactively, for the worst of all possible reasons. Where I’m supposed to feel his presence, there’s only a void.

FROM HERE TO ETERNITY: TRAVELING THE WORLD TO FIND THE GOOD DEATH by Caitlin Doughty

Los Angeles-based mortician and writer Caitlin Doughty argues that such feelings result from the failures of America’s death industry, which has become “more expensive, more corporate, and more bureaucratic than any other on Earth.” According to the National Funeral Directors’ association, the median cost of traditional funeral with a viewing and burial was $7,181 in 2014; Doughty cites the current average at $8,000 to $10,000. 14 percent of US funeral homes are run by publicly traded firms. Service Corporation International, the largest funeral services provider in the US, operates over 2,000 funeral homes employing more than 24,000 people. The $20-billion industry often pushes grief to the margins by pressuring families to make a series of high-stakes decisions on a very short timeline—most funeral homes come to pick up a body within an hour of being contacted.

In some cases, funeral homes deliberately exploit families for financial gain at a time of profound vulnerability. A 2013 undercover investigation conducted by the Federal Trade Commission revealed that up to one in five American funeral homes engage in “deceptive and manipulative practices.” The offenders violated the 1984 Funeral Rule, which stipulates that funeral homes must provide itemized price lists. The compulsory bundling of products and services is prohibited: They can’t require that you buy a traditional varnished casket when all you want is a cremation; an inexpensive, unfinished wooden box must be made available. And the law bans the aggressive sale of products that are not required by law, like the use of a hearse to transport remains to a cemetery. Though most funeral homes keep dedicated websites, few display their prices online, which makes it challenging to compare costs.

With its focus on profits, the industry has also changed the way we treat dead bodies. As recently as a hundred years ago, “no one would have questioned a wife washing and dressing the body of her husband,” Doughty writes, “or a father carrying his son to the grave in a homemade coffin.” The Civil War is often identified as the point at which practices began to shift. Embalming became more common as soldiers’ bodies were transported from the South to the North. It gained even more popularity after Abraham Lincoln’s funeral train tour, which took his embalmed corpse to 180 cities between Washington D.C. and Springfield, Illinois. Now, the United States is the only country in the world in which chemical conservation of the dead is common practice—a process that can cost anything from $495 to over $1,000. What was once a practical solution with a historically specific context has become a profitable norm, despite, according to the CDC, providing no public health benefit.

In her book From Here to Eternity: Traveling the World to Find the Good Death, Doughty tries to find a better way to die and to grieve, seeking out death rituals from the Western United States to Japan, Spain, Indonesia, and beyond. It sounds a bit like Eat, Pray, Die, but her project is much larger than its premise first implies. She is searching not for personal spiritual enlightenment or the morbid titillation of thana-tourism, but for practical, radical alternatives to our corporatized death industry. Her travels illuminate a host of compelling possibilities for better funerals and a less fraught relationship with our dead. But the book also reveals a larger failure of our culture to allow for mourning and grieving after the last goodbye. If it is hard to navigate the death care industry, it is harder still to work out how to live with grief.

On her travels, Doughty finds many rituals that involve prolonged contact with corpses—prolonged, at least, by American standards. All around the world, she meets people less troubled by the physical reality of dead bodies, whether those bodies are burned to ash, mummified, “decomposting,” or lying under glass in their natural, un-embalmed state. In Japan she visits a corpse hotel where families may rent a suite that looks like an ordinary condo and “just be with the body, free from the performance required at a formal viewing.” And at the Rinkai crematory, Doughty learns about the practice of kotsuage. According to this custom, families are escorted into a room called a shūkotsu-shitsu after a cremation, where they pick up their loved one’s remaining bone fragments and place them gently into an urn.

In North Carolina, Doughty spends time at Western Carolina University’s Forensic Osteology Research Station (FOREST), where corpses donated to science are turned into compost. The bodies are laid to rest in a wooded research facility, blanketed with alfalfa and woodchips, covered in a silver shroud, and in the hot sun to turn into dark, nutrient-rich soil after a period of weeks. The project is still in its experimental phase, but the FOREST researchers hope it will become a green solution with a therapeutic arc. Families will ultimately be invited to collect the soil made from the body of their loved one and with it, cultivate new life.

Doughty finds her most extreme example of dead body positivity in Tana Toraja in Indonesia. For Torajans, the border between the living and the dead is porous. Corpses frequently remain in the home for a period of weeks, months, or even years, and are cared for like any other member of the family—bathed, fed, dressed, and spoken to. After they are finally buried, following elaborate community funerals, bodies are periodically exhumed during what is called the ma’nene’. Families have the opportunity to reunite, and even picnic, with their dead; they can make animal sacrifices they may not have been able to afford at the time of the original burial. What sounds grisly to some is, to the Torajans, both tender and sacred: “Hauling someone out of their grave years after their death is not only respectful,” Doughty writes, “but it provides a meaningful way to stay connected to their dead.”

Doughty’s chatty calm in the presence of dead bodies and her arguments against American squeamishness are admirable. But it feels, at times, like From Here to Eternity’s focus on death comes at the expense of grief. This is not a failure of the project so much as its shape; the nature of Doughty’s inquiry makes grief a secondary concern. It does appear sporadically: In the chapter on the Day of the Dead, she travels to Mexico with her friend Sarah to visit a mummy museum, as well as the altars families erect to honor the people they’ve lost that year. Sarah is still reeling from the decision to obtain a late-term abortion when her fetus was diagnosed with trisomy 13, and Doughty writes about the isolation of Sarah’s grief, her feeling that the inability to move on from the loss had made her “radioactive” to her friends and coworkers. Her loss, and the future she had imagined, is devastatingly rendered. There is a digression, too, on the Western funeral industry’s fixation on “dignity,” by which they really mean silence, composure, and repression—this, too, is a moment of genuine feeling, and Doughty shows that though her tone is often light, she has the capacity to move and enrage.

But just as often, Doughty fails to engage with the realities of mourning. At an open-air cremation she attends in Crestone, Colorado, she professes to witness the “pall of grief [lifting] from the circle.” I don’t doubt the power of this ceremony. But the implication that it was able to dispel sadness—that such a thing is possible, or even desirable, at a funeral—gives me pause. Worse, in the book’s epilogue, she writes, “A sense of purpose helps the mourner grieve. Grieving helps the mourner begin to heal.” This is a neat, linear progression; in other words, it’s exactly what the experience of grief is not.

There is more to death and dying than funerals. From Here to Eternity is in some ways a missed opportunity to explore how the profit motive has distorted our experience of death—not just burial, but all the feeling that comes after a body is buried. In The Last Word, Julia Cooper writes of the difficulty of grieving under late capitalism. The amorphous, endless, and unpredictable nature of grief puts it fundamentally at odds with pressures “to be efficient, to progress, to—most of all—get back to work.” But, she writes, “mourning doesn’t work that way. There is no timeline because the work of grieving is never done. There is nothing efficient or productive about loss, but there it is all the same.” Grieving is the enemy of work, and we’re expected to suppress the former in the interest of the latter.

Minimizing the pain of personal loss, Cooper argues, is in service of “maintaining productivity for the benefit of a capitalist system.” Public displays of grief are shunned in part because they undermine the relentless positivity our economic system feeds on. The isolation of those who are unable to successfully curb their mourning is “a socially enforced strategy of our neoliberal era.” The repression of grief is also materially enforced: The standard paid bereavement leave, where it does exist, is three days. At Facebook, COO and Lean In author Sheryl Sandberg changed the company’s bereavement policy following the sudden death of her husband in 2015; the company now offers employees a comparatively generous 20 days paid leave following the loss of an immediate family member.

In the op-ed Sandberg wrote for The New York Times about her children’s experience of bereavement, she talks about grief in the language of business. The death of a parent is “adversity”; the word “resilience” is used six times, while “grieving” makes one appearance. Sandberg writes of her son and daughter’s loss (and her own) alongside the story of a friend’s child who was bullied at summer camp, with the implication that both experiences can be “overcome” with the same set of therapeutic tools. Sandberg’s approach isn’t insincere; original or not, the idea that “there is no wrong way to grieve” is an important one. But for those who don’t find this way of thinking helpful, our culture offers few other ways to address grief and work.

Caitlin Doughty’s mission to reimagine the death industry—to cast out our shame and fear of the dead—is an important one, for which she makes the case well and with good humor. More humane and meaningful rituals around death would doubtless ease the transition into the new reality that awaits the living after a traumatic loss. For my part, I look forward to one day spreading what I’ve kept of my father’s ashes, at a site less dour than a New Jersey tomb. But reforming our funeral industrial complex is only the beginning of the work ahead of us.

Complete Article HERE!

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12/9/17

Four Tasks Between Death and Burial

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After death, there are four main tasks that need to happen before the burial. These can be achieved with the help of a funeral home or with the help of loved ones facilitating a home funeral. Learn what needs to take place between death and burial and the role of a funeral home versus a home funeral during the process.

When preparing for death, many people know that there are options for how a person is treated as they are dying. Documents may be completed, hopefully well in advance of the dying process, to express those personal wishes. Documents may include a Living Will, Health Care Power of Attorney, or 5-Wishes. Few know that there are options for after-death care. There are 3 options for the disposition of the body between death and interment or cremation:

Option 1: Hire a funeral home to carry out all aspects of after-death care, including transportation, refrigeration, initiation of death certificate, obituary, cremation and/or transportation to place of burial, and coordination of set up at cemetery for the graveside service.

Option 2: Hire a funeral home to carry out some of the above mentioned aspects of after-death care and take care of other details utilizing family and friends.

Option 3: Have family and friends direct the details of after-death care. This process is call a Home Funeral.

Four Main Tasks

Regardless of which option you choose for after-death care, four main tasks will need to take place between death and burial:

  1. Transportation From Place of Death: The body may need to be moved from the place of death (such as a hospital/nursing facility or home) to the place of after death care (either a home or a funeral home).
  2. Care of the Body: The body will need to be cared for until the time of burial. This care may include bathing, dressing, refrigeration or dry ice application, and perhaps wrapping in a shroud before cremation or burial.
  3. File Death Certificate: A death certificate will need to be filed. This includes gathering the information to complete the certificate, signature from attending physician, and filing with the county registrar.
  4. Transportation To Burial Site: The body will need to be transported from the place of care to Carolina Memorial Sanctuary when it’s time for the burial.

Between Death & Burial: Four Tasks

Before we go over the four steps that take place between death and burial, it’s important to understand the difference between a funeral home and a home funeral. If you’re not clear on the differences, read this page first.

The four tasks between death and burial are pretty detailed, so we’ve created the following graphic to help show your options. Scroll down to see a written explanation of the four main tasks.

Task 1: Transportation From Place of Death

Death can occur anywhere but will often occur at home, in a hospital, or in a hospice center. For unexpected deaths, the body is often brought to a hospital to be examined by the medical examiner. Depending on whether you’re opting for a home funeral or the assistance of a funeral home, the body will need to be transported to the place of care.

Funeral Home

If you hire the assistance of a funeral home, they will come to the place of death and pick up the body and take it to the funeral home for care.

Home Funeral

If you are having a home funeral, you can pick up the body from a hospital, hospice center or morgue and bring it home yourself. You also have the option of hiring a funeral home to pick up the body and transport it to the home for you. If you choose to pick up the body yourself, CEOLT is happy to act as a liaison to help that transition go smoothly.

Task 2: Care of the Body

Until the time of burial, the body will need to be cared for and kept cool. Again, this can be done at home or at a funeral home.

Funeral Home

Once a funeral home has picked up the body and brought it to their facility, they will then clean and dress and/or shroud the body. Afterward, the body will be placed in refrigeration to keep it cool until the day of burial, at which point the body will be transported to the burial site.

Home Funeral

For home funerals, once the body has been transported to the house, the body is first cleaned and then dressed and/or shrouded, and then placed in a room where the body can rest and where friends and family can visit if they choose. To keep the body cool, dry ice is usually employed. Certain traditions and spiritual faiths observe the practice of allowing the body to lie in state for multiple days. Using proper care, a body can be kept in the home for multiple days without issue until the time of burial. There are exceptions to this and having the support of an experienced person from CEOLT or going through the home funeral course will help to address the circumstances that could arise. Caroline Yongue, our Director, has been assisting families with home funerals for over 20 years, and has rarely encountered a situation where a home funeral wasn’t possible.

Task 3: File Death Certificate

While the body is being cared for and waiting for burial, a death certificate will need to be filed.

Funeral Home

If going the route of a funeral home, they will file the death certificate for you. You will need to provide personal information of the deceased.

Home Funeral

If doing a home funeral, an individual who is assisting will need to file the death certificate.  This includes gathering the personal information for the deceased, obtaining the signature and cause of death from the attending physician and filing the death certificate with the County Registrar (in the county where death happened).

Task 4: Transportation To Burial Site

The final task to carry out will be to transport the body to the burial site just prior to the time of burial. The date of burial will need to be coordinated with Carolina Memorial Sanctuary in advance so that we can prepare the grave and prepare for the service.

Funeral Home

On the date of the burial, the funeral home will transport the body to Carolina Memorial Sanctuary usually 30-60 minutes before the service is scheduled to begin. They will either release the body to Carolina Memorial Sanctuary or transport the body to the gravesite, depending on the circumstances.

Home Funeral

Just like with the first transportation, from the place of death to the place of care, getting the body from the home to the Carolina Memorial Sanctuary can be done by friends/family assisting with the home funeral or a funeral home can be hired for this service. Carolina Memorial Sanctuary will consult with you and recruit the help of volunteers if additional hands are needed to transport the body from the vehicle to the gravesite.

Final Thoughts: Saying Goodbye Before the Body Is Taken Away

We want to end by sharing some final thoughts on saying goodbye to your loved ones. Contrary to popular belief, the body does not have to be whisked away the moment death occurs. When death occurs at home, most people believe that they are obligated to immediately call 911 or a funeral home so they can quickly transport the body away. Or if a loved one has died at a hospital or hospice center, there may even be pressure from the staff to have the body removed. If you have decided to use a funeral home and the body will not be coming back home, you have the right to ask to spend time with the body of your loved one and say goodbye before the body is transported away from your home/the hospital/hospice center. The opportunity and time to say goodbye can be very healing and beneficial and help with closure and grieving. If a loved one dies at home, you can let the funeral home know that you would like some time with your loved one before they come to pick them up. It doesn’t even have to be the same day (this is known as a “delayed pickup”). If a loved one dies at a hospital or hospice center, let the staff know that you would like time with your loved one. They will often allow a number of hours for this to  take place. You even have the option of having the funeral home bring the body to the home for goodbyes, and then have them transport the body to the funeral home for care and refrigeration before burial. Last – you always have the option of going to the funeral home and having your goodbyes there. The time after death is the last time some people have to see their loved ones and say goodbye – so be sure to ask for what you want and what you need and know that you can take your time.

Complete Article HERE!

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11/26/17

Families turn to death midwives for help with final passage

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Anna Benton, of Milwaukee, left, Georgette Paxton, of Madison, center, and Jennifer Snow, of Waunakee, look over Heather Ockler, of Monona, who is playing the role of a dying person wrapped in a shroud during a home funeral demonstration. It was part of a death midwife class taught last month by Sharon Stewart, who helped aspiring death midwives practice skills such as washing and shrouding a body. Death midwives, sometimes called death doulas, are increasingly helping families prepare for and navigate the death of loved ones, in addition to or instead of hospice care and funeral homes.

By DAVID WAHLBERG

Before Valli Warren’s husband died last year after a long illness, the Stoughton couple knew they wanted a home funeral and green burial.

But they weren’t sure how to make those things happen. They turned to Sharon Stewart, who delivered ice packs to preserve the body, shared videos about how to wrap it in a shroud and taught pallbearers how to carry it out of the house on a board.

Stewart also helped Warren file paperwork, including a permit letting her transport her husband to Circle Cemetery, near Barneveld, where he was laid to rest without being embalmed or using a casket or vault.

“She walked me through every phase,” Warren said.

Stewart is a death midwife, a new kind of occupation that provides emotional, spiritual and practical support to families before and after death — in addition to, or instead of, hospice care and funeral homes.

The service, which has emerged around the country over the past decade, is analogous to what birth midwives do compared to obstetricians. Some who offer the assistance call themselves death doulas or end-of-life midwives.

‘Back to their roots’

Whatever the title, the providers say they help people “take back” the death process from hospitals and funeral homes. Services include leading family discussions about death planning, sitting vigil with people as they die, helping family and friends wash the body afterward and aiding in tasks such as selecting memorial cards, sending obituaries to newspapers and closing social media accounts. It often involves home funerals or green burials.

“We’re taking families back to their roots, the tradition of when we were born and when we died in our own homes,” said Stewart, a former detective who lives near Brooklyn, south of Madison. “We laid in honor in our parlors, and the community came together to provide care for the family.”

Liz Humphries, a former birth midwife and hospice nurse who recently added an end-of-life doula service to Seasons of Life, her senior care company in Middleton, said, “It’s about reclaiming a really sacred and beautiful human experience.”

Mary Paulauskis, a former hospice nurse from Madison, has added what she calls end-of-life transitions counseling to her business, Mindful Awakenings, through which she teaches meditation.

Paulauskis focuses on helping people think about who and what they want around them as they die. She also coaches loved ones on what to say to a dying person and how to interact — letting them know it’s OK to lie next to the person if they want to, for example.

“It’s creating a space of whatever the patient said they want,” Paulauskis said.

Many people don’t realize that there are several ways to dispose of bodies without embalming, including new, greener types of cremation, said Angie Buchanan, a death midwife in Waukesha who trains death midwives around the country. She informs clients of the options and guides them through their choice.

“We’re the water that runs between the rocks of the medical profession and the funeral industry,” Buchanan said.

Dr. Toby Campbell, chief of UW Health’s palliative care program and a board member of Agrace Hospice and Palliative Care in Fitchburg, said he understands why death midwives are catching on. He said hospice care typically includes two or three visits a week from a nurse or social worker, and an occasional call from a doctor.

“That leaves about 99 percent of the time you and your family are on your own,” Campbell said. “That’s a big space. There are giant gaps between the health care system and death, even including hospice.”

Jim Olson, president-elect of the Wisconsin Funeral Directors Association, said caring for a body after death and managing a funeral are big jobs. Most people will continue to seek help from funeral directors, he said.

Death midwifery is “another alternative for families, which we think is great,” said Olson, who owns Olson Funeral Home and Cremation Service in Sheboygan. “Am I afraid it’s going to affect my business? No, absolutely not.”

There is no licensure or government certification for death midwives. Experienced practitioners, such as Stewart and Buchanan, offer training, as does the New Jersey-based International End of Life Doula Association, which held a session in Madison last year.

Many training programs offer their own certification. The burgeoning field is in a similar situation to massage therapy in the 1990s, before doctors pushed for its regulation, Buchanan said. In Wisconsin, certification for massage therapists started in 2003, with licensure beginning in 2010.

Fees for death midwives vary. Buchanan said she charges $100 for a consultation and up to $2,000 for services covering the whole death process. Stewart has accepted donations of $100 or $200 from some clients, but she doesn’t plan to establish rates until she retires from her day job, at the state public defender’s office, and devotes more time to death midwife duties.

Paulauskis said she plans to charge $25 to $50 for a counseling session and negotiate rates for other services but let people pay what they can. An academic adviser at the UW-Madison School of Social Work, she plans to continue making her living in other ways.

Humphries, who started her end-of-life doula service last month, said she might charge $40 to $100 an hour but offer a sliding-fee scale for people with low incomes.

Humphries is also an organizer of Walking Each Other Home Madison, a group that started in 2014 to help people carry out home funerals and green burials. People can rent the group’s home funeral kit, which includes a body board, ice packs, soap, lotion, diapers, latex gloves and small bags of rice to place over the dead person’s eyes to keep them closed.

‘The personal touch’

Stewart, who has long volunteered at Monroe Clinic’s hospice program, said she saw the need for a more personal death service after her brother died in a car crash at age 19. She was 21.

Police came to the house in the middle of the night, told her mother her son was dead and left. Stewart wanted to see her brother’s body before he was embalmed, but the funeral director wouldn’t let her, she said.

“There had to be a better way,” she said.

Later, as a detective for the Lafayette County Sheriff’s Department in Darlington, Stewart tried to deliver death notifications with more sensitivity. But she wasn’t able to do all she wanted to help grieving families. After a shoulder injury forced her to retire, she discovered death midwifery.

“I thought, ‘This is it. This is the personal touch. This is the attention that families need,’ ” she said.

At a death midwife class she taught last month, Stewart told students to help dying people reconcile with others if they ask, separate arguing family members at the bedside if necessary and encourage loved ones to say goodbye and leave the room if the dying person wants to die alone.

“Your job as a death midwife is to be an advocate for that dying person,” she said.

When Laurie Larson’s husband, Dennis Presser, died suddenly from a heart attack at age 54 four years ago, Stewart helped Larson and her two teenage children navigate the chaos.

Stewart joined Larson when she met with a funeral director to plan the funeral, which took place at the funeral home.

She organized an intimate gathering for family and close friends at the crematorium, with candles, incense and music. As Presser’s body lay inside an open cardboard cremation box, people read poems, told stories and colored the box. Then they placed him in the chamber, and Larson hit the ignition switch.

“I would never have had the energy to create that beautiful ritual,” said Larson, of Madison. “Sharon helped me in so many ways that I never would have thought I needed to be helped.”

Warren’s husband, Spencer, died at 64 from amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s disease.

Stewart helped the couple carry out their wishes. His body remained at home for three days, instead of being whisked off to a funeral home. “I had time to be with him; it was very healing,” Warren said.

As family and friends came for the home funeral, volunteers changed ice packs beside his body as he lay on their bed for viewing. Warren drove him to Circle Cemetery, where gatherers sang and played guitar before shoveling dirt over his shrouded body.

“It was the most natural thing I’ve ever experienced,” Warren said.

Complete Article HERE!

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11/25/17

The Wisdom of End-of-Life Care

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Buddhist teacher Frank Ostaseski has been one of the leading voices in contemplative end-of-life care since the 1980s.

By Lion’s Roar Staff

In this video, Ostaseski talks with Lion’s Roar’s Lindsay Kyte about the lessons he’s learned at the bedsides of thousands of dying people, his new book The Five Invitations, and the future of end-of-life care.

Complete Article HERE!

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11/21/17

Taking Over Your Aging Parents’ Finances

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When to step in — and how to guide their financial future

by

In the year 2011, the Baby Boomer generation started turning 65. Over the next 13 years, 10,000 Boomers will reach retirement age every day.

For the adult children of the Baby Boomers, these are not abstract statistics but real-life turning points that can provoke uncertainty and anxiety. But consider the advice of certified financial planner and author Lise Andreana:

“There is no time like the present to begin preparing for your aging parents’ financial future. Being proactive can help minimize a great deal of stress and uncertainty down the road — for your parents, yourself, and your entire family.”

The Simple Dollar is here to help you begin the journey of guiding your parents through this stage of their lives. We’ll cover how to approach the conversation, documents you’ll need, costs to consider, and more. Let’s get started.

Table of contents

Broaching the subject
Power of attorney
Document checklist
Long-term care costs
The sibling situation
Glossary
Additional resources

The Talk: How to handle a sensitive subject

Every family is different, and yours may have its own quirks or hangups about money. Although no size fits all, here are some suggestions on having The Talk with your parents:

When is the right time?

Many senior care experts recommend following the 40/70 Rule. As you approach 40 and your parents approach 70, it can be the most opportune time to discuss financial issues, as well as long-term care, estate planning and other relevant topics.

It’s better to address the situation proactively than to wait for a crisis to unfold, which could force your family into making decisions on the fly.

Are my parents already having trouble?

Be on the lookout for warning signs that your parent may be struggling to manage his or her finances, which can include:

  • Unpaid bills
  • Bounced checks
  • Calls from creditors
  • Unusual or frivolous purchases

What’s the right approach?

To help prevent conflict with your parents when you talk about finances, consider the following.

  • Keep the circle small.
    Discussions involving a few key people can be less intimidating than a full-blown family meeting that could leave your parents feeling like you’re ganging up on them.
  • Focus on positives, not negatives.
    Don’t frame your concerns in terms of physical or mental decline. Keep the focus on a bright future for the entire family.
  • Treat them as peers and equals.
    Help your parents understand that you’re trying to look out for them, not look after them. Invite them to join an ongoing conversation.
  • Find an ally.
    Your parents might be more receptive if your family attorney or financial planner joins the discussion in the role of an objective third party.
  • Make a show of solidarity.
    This subject presents an opportunity to do a thorough check of your own finances to see that everything’s in order. This way, your parents might not feel that you’re singling them out or passing judgment.
  • Avoid fighting words.
    Certain words and phrases — including always, never and nothing — have a tendency to put people on the defensive and shut down communication. It can happen in any kind of personal relationship, including parent-child.

When in doubt, preserve your parents’ dignity. Be aware of the potential for wounded pride — speak respectfully and tread lightly.

Expert opinion

“Start the conversation early. Put in place a plan your family can follow when your parents can no longer make decisions on their own. … It’s important to ask questions and help your parent come to a decision on his or her own terms.”

Terri Rasp
Director of Sales, Analytics, and Training

StoneGate Senior Living, LLC

Power of attorney

A power of attorney, also called a POA, is a legal document that grants a person or organization (known as the agent or attorney-in-fact) the authority to act on behalf of someone (the principal) in specific financial, legal and health-related matters.

A POA with you as the agent and your parent or parents as principal could play an integral role in helping you protect their financial well-being. With a power of attorney in place, you will be able to act quickly if a parent suffers a medical emergency, for example, or experiences a steep decline in mental competence.

Should I use a lawyer for a POA?

The answer is, most likely, yes. You don’t necessarily have to go through an attorney, but it’s probably the wisest course of action. The power of attorney process can vary from state to state, and trying to go it on your own could result in a costly oversight.

Unless you’re an attorney or a financial adviser, you may not have the expertise to navigate these waters. Also important is the fact that a professional often brings some much-needed objectivity to a situation where emotions can cloud the issues.

Can I get a POA on my own?

Some legal advice websites let you download a printable version of your state’s POA form. However, bear in mind that you’re dealing with the complexities of legal documents and contracts. There’s no shame in seeking the advice of your family attorney, your financial adviser, or both to help you craft a POA that addresses your family’s specific needs.

What’s the best time to get a POA?

The key factor in a child-parent power of attorney is obtaining it proactively, before the parent loses the ability to manage their own affairs.

What kind of POA should I get?

A lot depends on the current status of the parents and when the family wants the POA to take effect. An attorney may recommend a durable power of attorney, which contains a durability provision to ensure it remains in effect if the principal’s condition changes. The change in status could be a sudden medical issue that leaves the parent debilitated or a deterioration in mental capacity.

A power of attorney covering financial affairs differs from a health care POA, which means you’ll need to address those issues separately.

What if my parent has dementia or Alzheimer’s?

Depending on the laws of your state, getting a POA for a parent who has dementia or Alzheimer’s disease may require a letter from a physician affirming that your parent understands what the POA means and can legally consent. If a parent is deemed unable to meet that standard, another option may be for the child to become an adult guardian or conservator instead — a process that would require a judge’s approval.

Is a power of attorney the same as a living will?

No, there’s a difference. A living will expresses the signer’s wishes regarding medical treatment in the event he or she loses the capacity to make decisions (for example, whether extraordinary measures should be taken to preserve their life or resuscitate them). This kind of document is sometimes called an advance health care directive.

As with a power of attorney, state-specific versions of living wills are available online. Still, it’s wise to consult an attorney about the specifics of your situation.

Obtaining power of attorney: 3 key steps

Expert opinion

“Prior to cognitive decline, I advise my clients to help their parents establish the proper paperwork. This includes the creation of a will, durable power of attorney, health care power of attorney, and advanced directives. The power of attorney forms are very powerful documents that should only be in the hands of somebody your parents trust. Whether that is a family member or a professional, it is up to them.”

Nate Byers
CPA/PFS, MBA

JBC Wealth Advisors, LLC

Financial document checklist

Here’s a list of important documents for reviewing a parent’s finances. These records will help you get a better idea of income and financial obligations. Double-check this list with your financial adviser to see if anything needs to be added.

_ Bank accounts
_ Credit card statements
_ Monthly bills (utilities, rent/mortgage, subscriptions, etc.)
_ List of loans and other debts
_ Social Security statements
_ Social Security benefit verification letter
_ Pension, 401k and annuity documents
_ Tax returns (for three to seven years)
_ Investment documents (savings bonds, stock certificates, brokerage accounts, etc.)
_ Insurance policies — life, health, and property
_ Vehicle titles
_ Property deeds
_ Dues-paying memberships (HOA, AARP, clubs, etc.)
_ Birth certificates and marriage licenses

Don’t forget …
_ List of their usernames and passwords for online customer portals
_ Combination/keys to their safety deposit boxes

Expert opinion

“The first thing that children should do is to start aggregating information on the parents’ financial information. Help your parents consolidate their holdings. Fewer bank accounts can save you tons of time.”

Scott W. Johnson
Owner, WholeVsTermLifeInsurance.com

Long-term care costs

When looking at long-term care solutions, be aware that private insurance and Medicare have some limitations. While Medicare and insurance do provide coverage for medical treatment and prescription drugs, custodial care such as long-term care facilities and home health care may be a different story. As a 2013 study points out, Medicare:

  • Pays only for “medically necessary care in a skilled nursing facility” — which is not the same as an assisted living center.
  • Pays for home health care “under very limited circumstances and for brief stretches of time.”

In some unfortunate cases, coverage gaps in Medicare and private insurance can lead to families exhausting financial resources (known as “spending down”) until their parents qualify for Medicaid. To help prevent this worst-case scenario, you may want to consult a financial planner about some proactive options such as:

Long-term care insurance (LTCI)

Expenses covered by long-term care insurance generally include assisted living, nursing home, adult day care, Alzheimer’s care facilities and hospice. The key is encouraging parents to buy coverage early, before they develop health problems.

Pros and cons include: LTCI can be pricey, although it could cover some expenses that Medicare or private insurance do not.

Long-term care benefit plan

This option involves converting a life insurance policy into funding specifically for long-term care. These insurance conversions are also called life care assurance, Medicaid life settlement, or life care funding. It’s commonly used as part of a spend-down strategy to receive Medicaid eligibility.

Pros and cons include: This strategy can provide an immediate source of funding. However, the family will lose the death benefit that an unconverted insurance policy would have provided.

Reverse mortgage

Some aging homeowners turn to reverse mortgages (also called home equity conversion mortgages) to turn their equity into cash while still retaining ownership.

Pros and cons include: Although it can provide a cash infusion, using a reverse mortgage to pay for senior care is a potentially risky, “last resort” type of move. Not everyone will qualify, and defaulting could lead to loss of ownership.

Medicaid

Unlike Medicare, Medicaid is jointly administered by the federal government and individual state governments. As a result, eligibility requirements and other rules vary from state to state.

In general, though, Medicaid recipients must have low incomes and assets with very low value. The program is intended to benefit the poorest Americans, so many middle-class families likely don’t qualify.

To get more information, check with the agency that manages Medicaid in your state. You can also contact an elder law attorney in your state or visit these websites:

Claiming your parents on your tax return

To claim a parent as a dependent, your financial support for them must be substantial — at least 50% of the total cost for housing, food, medical care and other items. Also, the parent can’t earn more than the personal exemption for that tax year (which was $4,050 in 2016).

So, unless your parent has a very low income and you pay more than half the cost of keeping them cared for, they probably wouldn’t qualify as a dependent. If the parent does qualify, you could receive tax benefits such as the Dependent Care Tax Credit and reduced taxable income.

To get definitive answers, ask your tax preparer. You can also call the IRS or make an appointment at a local Taxpayer Assistance Center.

Expert opinion

“When budgeting for an aging parent, Medicare costs need to be factored in. They pay a monthly premium for Medicare Parts B and D for life and then also a Medigap or Medicare Advantage plan to pay for the things like deductibles and coinsurances that Medicare doesn’t cover.”

Danielle Kunkle
Co-founder, Boomer Benefits

The sibling situation

Among adult siblings, the care of aging parents has the potential to spark conflict like few other subjects. Handling parents’ finances is no exception.

It’s not uncommon for someone who takes the lead as caregiver to feel overburdened and resentful toward a sibling taking a less active role. Fortunately, a personal care contract or caregiver agreement can help ensure that the sibling who makes the most sacrifices is at least financially compensated.

Under this type of agreement, parents or other family members agree to reimburse the family member acting as caregiver. Compensation options include:

  • Direct payments (the income will be taxable)
  • An estate plan, or additional consideration in the parent’s will
  • Transferring homeownership to the caregiver
  • A life insurance policy with the caregiver as beneficiary

An elder law attorney can help you draw up a caregiver agreement. As for the form that compensation takes, families should think carefully about options that could lead to future conflicts between siblings (specifically, an estate plan or home transfer).

About those conflicts…

Even if you have a financial arrangement in place, don’t forget that sibling caregivers often have emotional needs in addition to financial ones. Expert tips on how to defuse conflict and increase support include:

  • Stay in communication, even if it’s just a weekly call
  • Arrange for someone else to step in every now and then so the caregiver can have time off
  • Ask for outside help (family counselors, social workers, clergy, etc.) when conflict becomes unmanageable

Expert opinion

“Personal care agreements are valuable for two very different reasons. One is emotional, for the family caregiver to feel as though they have a ‘real’ job and have at least a written record of what they need to do. Many have to cut back on work or stop working during a period of caregiving. The agreements can also serve as a record of the work done for siblings.”

Michael Guerrero
Senior Benefits Adviser

Elder Care Resource Planning

Complete Article HERE!

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11/18/17

For Patients With Heart Failure, Little Guidance as Death Nears

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Americans are living longer with heart disease, managing it as a chronic condition. But there are few rules for these patients as they near the end of life.

Ricky Hurst, whose heart is failing, was told by doctors to get his affairs in order as his condition worsened. More patients like him are living longer with heart failure, but there are no widely accepted guidelines for care as they near death.

By

Ricky Hurst’s doctors told him last year that there was nothing more they could do. His heart was failing and he should get his affairs in order. The end was coming.

His family gathered. He spoke to his pastor and resigned himself to death. “If it was meant to be, it was meant to be,” he said.

But. Mr. Hurst, 56, a former ranger and school football coach in Jackson, Mich., is still alive, although his heart continues to weaken. And patients like him are raising a new dilemma for doctors.

Heart disease once killed ruthlessly and quickly; patients like Mr. Hurst succumbed to heart attacks and sudden death from cardiac arrest. But with improved medical care and implanted devices that bolster the heart, a growing number of heart patients survive for years, even decades, coping with a chronic, progressive condition punctuated by crises and hospitalizations.

Their disease at that point is called heart failure — their weakened heart cannot pump enough blood to supply the body’s needs. The number of Americans with heart failure increased to 6.5 million in 2011-2014 from 5.7 million in 2009-2012, according to the American Heart Association.

More than 10 percent of those over age 80 have heart failure, and more patients are living longer with advanced disease. Even as the death rate from heart attacks is falling, the figure for heart failure is rising.

Yet there are no widely accepted guidelines for dealing with these patients as they near death. Cancer specialists regularly move their patients to hospice at the end of life, for instance, but few cardiologists even think of it. Heart patients account for just 15 percent of hospice deaths, while cancer patients make up half, according to a recent study.

Mr. Hurst carries a battery-powered and surgically implanted heart pump.

That paper, published in the Journal of the American College of Cardiology, reviewed a number of ways in which heart patients are let down at the end of life. Implanted defibrillators often remain activated until the very end, for example, even for those in hospice.

A fifth of heart patients with defibrillators get shocked by them in the last few weeks of life, and 8 percent get shocked minutes before dying. Most patients are never told that they can ask that the defibrillators be turned off.

“Getting shocks at the end of life is not really helping patients live longer or better,” said Dr. Larry Allen, a heart failure specialist at the University of Colorado and an author of the study.

“We shouldn’t have a single one of these cases happening,” said Dr. Haider Warraich, a cardiology fellow at Duke University and first author of the study.

Experts often focus on the strides made in preventing and treating heart disease. Its incidence has declined by 70 percent in the past 50 years. People have heart attacks later in life than they used to, are more likely to survive them, and often live for years afterward with few or no symptoms.

“We are very proud” of that progress, said Dr. Patrice Desvigne-Nickens, a medical officer at the National Heart, Lung and Blood Institute.

Still, she added, cardiologists and their patients should be discussing end-of-life options and palliative care earlier in the course of heart failure.

“Everyone is uncomfortable with end-of-life discussions,” she said. “The field of cancer may be ahead of us. We should learn from looking at their example.”

But cardiologists thrive on the dramatic saving of lives, said Dr. Michael Bristow, a cardiologist at the University of Colorado Denver. They devote their professional lives to rescuing patients having heart attacks and bringing them back from the brink.

End-of-life care is not typically their focus; neither do they spend much time pondering what some of their patients may experience in the future. “Those who go into cardiology are not necessarily ones who want to deal with death and dying,” Dr. Bristow said.

The very nature of end-stage heart failure makes it all the more difficult to prepare.

“Very few patients understand the trajectory of the disease,” said Dr. Lynne Warner Stevenson, a heart failure specialist at Vanderbilt University. The path has peaks and valleys, but as the patient declines, each peak is a little lower than the one before.

And often doctors do not tell patients what to expect.

“Unfortunately, when you have patients with a chronic illness like heart failure, everyone thinks someone else will talk about it,” Dr. Stevenson said. “Too often, no one takes ownership of the last stage of the journey with the patient.”

Dr. Ellen Hummel of the University of Michigan, one of a small number of doctors specializing in cardiology palliative care, said the typical patient with cancer will usually experience a “fairly predictable” decline.

“They will be less able to take care of themselves,” she said. “They will be more symptomatic and come back to the hospital more frequently. And once this starts, it will probably continue until they die. Most people can see the end coming.”

But patients with end-stage heart failure are more likely to have wild swings, Dr. Hummel said, veering from feeling better to being terribly ill.

“It is confusing to both the patient and provider. Are they actually dying, or can we rescue them from a particular episode of worsening?”

Dr. Harlan Krumholz, a cardiologist at Yale University, agreed: “The issue is knowing who is really at the end of life.” For patients with heart failure, seesawing between good periods and bad, it can be very difficult to make the call.

Dr. Allen recently discussed all this with a patient, Ed Harvey.

Mr. Harvey, 75, has an implanted defibrillator, and his heart is weakening, pumping progressively less blood. Dr. Allen gave him medications that helped for a while, but, Dr. Allen said, “we have maxed out on what can be done.”

He can’t say with any certainty how long Mr. Harvey has. But now is the time, Dr. Allen told him, to talk about the end of life.

Mr. Harvey still feels pretty good, but “when you have congestive heart failure and it is not getting any better, you know that day is going to come,” he said.

He has been living with heart failure for more than a decade, and fears becoming a burden as his heart gets worse. It is now so weak that the only medical option left is an implantable pump. He knows that soon he will need full-time care.

“I have elected that if it got to that point,” he said, “put me in a hospice and let me go.”

Complete Article HERE!

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11/15/17

What It’s Like to Learn You’re Going to Die

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Palliative-care doctors explain the “existential slap” that many people face at the end.

By Jennie Dear

Nessa Coyle calls it “the existential slap”—that moment when a dying person first comprehends, on a gut level, that death is close. For many, the realization comes suddenly: “The usual habit of allowing thoughts of death to remain in the background is now impossible,” Coyle, a nurse and palliative-care pioneer, has written. “Death can no longer be denied.”

I don’t know exactly when my mother, who eventually died of metastatic breast cancer, encountered her existential crisis. But I have a guess: My parents waited a day after her initial diagnosis before calling my brother, my sister, and me. They reached me first. My father is not a terribly calm man, but he said, very calmly, something to this effect: “Your mother has been diagnosed with breast cancer.”

There was a pause, and then a noise I can best describe as not quite a sob or a yell, but feral. It was so uncharacteristic that I didn’t know then, and I still don’t know, whether the sound came from my father or my mother.

For many patients with terminal diseases, Coyle has observed, this awareness precipitates a personal crisis. Researchers have given it other names: the crisis of knowledge of death; an existential turning point, or existential plight; ego chill. It usually happens as it did with my mother, close to when doctors break the news. Doctors focus on events in the body: You have an incurable disease; your heart has weakened; your lungs are giving out. But the immediate effect is psychological. Gary Rodin, a palliative-care specialist who was trained in both internal medicine and psychiatry, calls this the “first trauma”: the emotional and social effects of the disease.

The roots of this trauma may be, in part, cultural. Most people recognize at an intellectual level that death is inevitable, says Virginia Lee, a nurse who works with cancer patients. But “at least in Western culture, we think we’re going to live forever.” Lee’s advanced-cancer patients often tell her they had thought of death as something that happened to other people—until they received their diagnosis. “I’ve heard from cancer patients that your life changes instantly, the moment the doctor or the oncologist says it’s confirmed that it is cancer,” she says.

The shock of confronting your own mortality need not happen at that instant, Coyle notes. Maybe you look at yourself in the mirror and suddenly realize how skinny you are, or notice your clothes no longer fit well. “It’s not necessarily verbal; it’s not necessarily what other people are telling you,” Coyle says. “Your soul may be telling you, or other people’s eyes may be telling you.”

E. Mansell Pattison, one of the early psychiatrists to write about the emotions and reactions of dying people, explains in The Experience of Dying why this realization marks a radical change in how people think about themselves: “All of us live with the potential for death at any moment. All of us project ahead a trajectory of our life. That is, we anticipate a certain life span within which we arrange our activities and plan our lives. And then abruptly we may be confronted with a crisisWhether by illness or accident, our potential trajectory is suddenly changed.”

In this crisis, some people feel depression or despair or anger, or all three. They grieve. They grapple with a loss of meaning. A person’s whole belief system may be called into question because “virtually every aspect of their life will be threatened by changes imposed by the [disease] and its management,” Lee has written. In a small 2011 Danish study, patients with an incurable esophageal cancer reported that after their diagnosis, their lives seemed to spin out of control. Some wondered why they had received a fatal diagnosis, and fell into despair and hopelessness. “I didn’t care about anything,” one patient said. “I had just about given up.”

In the 1970s, two Harvard researchers, Avery Weisman and J. William Worden, did a foundational study on this existential plight. Newly diagnosed cancer patients who had a prognosis of at least three months were interviewed at several different points. At first, for almost all the patients in the study, existential concerns were more important than dealing with the physical impacts of disease. The researchers found that the reckoning was jarring, but still relatively brief and uncomplicated, lasting about two to three months. For a few patients, the crisis triggered or created lasting psychological problems. A few others seemed to face the crisis, then return to a state of denial, and then double back to the crisis—perhaps more than once. In the study, the researchers describe a patient who was told her diagnosis, only to report to interviewers that she didn’t know what it was—and then make it clear she wasn’t interested in receiving a diagnosis in the near future.

Palliative-care doctors used to think that a patient was either in a state of denial or a state of acceptance, period, Rodin says. But now he and his colleagues believe people are more likely to move back and forth. “You have to live with awareness of dying, and at the same time balance it against staying engaged in life,” he says. “It’s being able to hold that duality—which we call double awareness—that we think is a fundamental task.”

Whether or not people are able to find that balance, the existential crisis doesn’t last; patients can’t remain long in a state of acute anxiety. Coyle has found in her work that later peaks of distress are not usually as severe as that first wave. “Once you’ve faced [death] like that once, it’s not new knowledge in your consciousness anymore,” she says.

The existential slap doesn’t always entail mental suffering, and medical professionals who work with the dying say there are rare cases in which patients seem to skip this phase altogether, or at least experience it in a much less painful way. “People can gradually come to the realization,” Coyle says. “No one has to go through the sudden shock of awareness.”

But for most, figuring out how to adapt to living with a life-threatening disease is a difficult but necessary cognitive process, according to Lee. When patients do emerge on the other side of the existential crisis, she finds that many are better off because of it. These patients are more likely to have a deeper compassion for others and a greater appreciation for the life that remains.

To arrive there, they have to squarely face the fact that they’re going to die. “If you’re an avoidant person, and you don’t like to think about these things, that works better when life is going well,” Rodin says. “It just doesn’t work well in this situation because reality doesn’t allow it. It’s like trying to pretend you don’t need an umbrella or something, or it’s not raining, when it’s pouring. You can do that when it’s drizzling, but eventually, you have to live with the rain.”

Complete Article HERE!

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