Lantern is a startup looking to ignite a conversation about how to die well

By Danny Crichton

America is a land of paperwork, and nowhere is that more obvious than at the end of someone’s life. Advanced care directives have to be carefully disseminated to healthcare providers and strictly followed. Property has to be divided and transferred while meeting relevant estate laws. And of course, there are the logistics of a funeral, cremation or other option that has its own serious complexities, costs and choices.

The worst time to figure out how to die is when you die. The best time to figure it out is precisely when you don’t have to.

For New York City-headquartered Lantern, the goal is to initiate those conversations early and give its users significantly better peace-of-mind, particularly in these dolorous times.

The company offers essentially a “how-to” platform for beginning to prepare for end-of-life, offering checklists and monitoring to ensure that the vast majority of details are figured out in advance. In some cases, the startup will handle the underlying details itself, while in other areas like estate planning, it works with partners such as Trust & Will, which we have profiled a number of times on TechCrunch.

Right now, the company has two plans: a simple free one and a $27 / year plan that tracks your progress on end-of-life planning and allows you to collaborate with family, friends or whoever else needs to be part of your decision-making. The company is in the process of adding other à la carte options for additional fees.

Last month, the company raised $1.4 million in a seed round led by Draper Associates with a few other firms involved. Earlier, the company raised a pre-seed round of $890,000 from the likes of 2048 Ventures, Amplify and others, bringing its total raised to date to $2.3 million. The company is organized as a public-benefit corporation and was founded in September 2018, and first launched a year later.

For founders Liz Eddy and Alyssa Ruderman, Lantern was an opportunity to tackle a looming problem in a compassionate and empathetic way. “I started my first company when I was 15,” Eddy, who is CEO, said. That company focused on dating abuse and domestic violence education for high school and later college students. “I really fell in love with the pace and variety of starting something new, but also in creating conversations around topics that people really don’t want to talk about and making it more palatable and comfortable,“ she said.

Later, she joined local suicide prevention nonprofit Crisis Text Line, which has an SMS-based network of crisis counselors who are trained to calm people and begin their process of recovery. She spent more than six years at the organization.

As for Ruderman, who is COO of Lantern, she most recently spent two years at Global Citizen, a nonprofit organization focused on ending extreme poverty. The two connected and incubated Lantern at startup accelerator Grand Central Tech.

The idea for better end-of-life planning came from personal experience. “I lost my dad when I was in elementary school,” Eddy said, “and saw firsthand how loss and grief impacts a family financially, emotionally, logistically, legally — every aspect.”

Today, many of these processes are offline, and the online products mostly available today are focused on individual elements of end-of-life planning, such as estate planning or selecting and purchasing a casket. Eddy and Ruderman saw an opportunity to provide a more holistic experience with a better product while also initiating these conversations earlier.

That pre-planning part of the product was launched just as the pandemic was getting underway last year, and Eddy said that “we had a sort of a really interesting launch where people were starting to come to terms with their own mortality in a way we hadn’t seen in a very long time.” Typical users so far have been between 25 and 35 years old, and many people start planning when they have a major life event. Eddy says that the death of a family member is an obvious trigger, but so is having a baby or starting a company.

One aspect that Eddy emphasized repeatedly was that having a will and pre-planning for end-of-life are not equivalent. “Even if you don’t have a dollar to your name after you pass away, there are a ton of other things that your loved ones, family members, whoever’s responsible has to consider,” she said.

From a product perspective, there are some nuances compared to your more typical SaaS startup. For one, the company needs to engage you regularly, but not too frequently. Unlike, say, a wedding, which is a single event that then is over, your documents and directives need to be occasionally edited and updated as a user’s life circumstances change.

Beyond that, one of the largest challenges with a product that talks about death is building a connection with a user that doesn’t seem cold, and, well, Silicon Valley-like. “Even as a product that is entirely virtual, making sure that you really feel that human connection throughout” is a high priority, Eddy said. “We use a lot of empathetic language, and our imagery, all of the illustrations are done by illustrators who have lost someone in memory of the person who’s lost.”

Longevity startups may remain a thesis for some VC investors, but handling the end — no matter when — is an activity every person faces. Lantern might shine just a bit more light on what is otherwise a debilitating and scary prospect.

Complete Article HERE!

These conversations are among the hardest I have had as a doctor

Few people want to die alone, and even fewer want their loved one to be alone in the final weeks, days and hours of their life.

By Julia Corfield

It’s a cold Saturday morning in Melbourne and I am a doctor at work in a palliative care unit. I have just reviewed one of my patients, whose body is beginning to reveal some of the tell-tale signs of dying.

His son stands over him and sadly remarks that “this is a bad time to die”.

With strict visiting restrictions firmly in place across Melbourne, there is a very real chance that his father will die alone and he knows it. This is the new normal.

In a state of disaster, there are a set of rules and visiting restrictions for families and friends of those dying in a hospital setting. These restrictions vary slightly between health services, but the message is the same: as few visitors as possible, for as short a time period as is reasonable.

For months now, hospital staff (myself included) have been chanting the mantra of seemingly arbitrary visiting windows, maximum numbers of visitors per patient and numbers of visitors permitted at the bedside.

In recent times, I have found myself asking questions such as “do all six of your siblings need to visit?” or “could your grandchildren say their goodbyes via FaceTime?”. These conversations are among the hardest I have had as a doctor.

Many find these new rules unacceptable, and with good reason. Few people want to die alone, and even fewer want their loved one to be alone in the final weeks, days and hours of their life.

However, these are not normal times, and a balance must be struck between compassion and safety. Across the world, and now in Victoria, we know that many people with COVID-19 are dying alone; but so are those without COVID-19. Both are tragic realities.

Under normal circumstances, achieving “a good death” is laden with obstacles, let alone in a pandemic. An inherent challenge is that a good death is an individualised experience, reflecting the diversity of the human person.

There are some commonalities across what constitutes a good death, and the company of friends and family features almost universally.

A current patient comes to mind — a woman in her 70s dying of lung cancer — who tells me almost daily that her breathing is bad but the feeling of loneliness even worse. She would like to see her grandchildren, but no children are allowed in the hospital.

Her brother visits, but the allocated two-hour visiting window is not long enough to fill the void created when faced with one’s own mortality. And so on. Her story is not unique.

Dying in a pandemic has brought with it new and more challenging obstacles, ones that make us question what it means to be human. Death is normal, but dying alone is not. So, frankly, when I hear my patients and their relatives say that it is a bad time to die, I can’t help but agree.

Ultimately, how we live and how we die tells us about society as a whole. Today, people die alone to protect society and this at least may be a small source of solace. Their strength and determination to push forward and adapt to this strange new world is a testament to the human spirit.

I hope, though, that those dying in this COVID-19 world know that their sacrifice has not gone unnoticed. Every day, their struggles are seen and felt. Many have had to forgo the so-called good death, and that is the undeniable truth.

Complete Article HERE!

An Overview of Filial Responsibility Laws

By Rebecca Lake

Taking care of aging parents is something you may need to plan for, especially if you think one or both of them might need long-term care. One thing you may not know is that some states have filial responsibility laws that require adult children to help financially with the cost of nursing home care. Whether these laws affect you or not depends largely on where you live and what financial resources your parents have to cover long-term care. But it’s important to understand how these laws work to avoid any financial surprises as your parents age.

Filial Responsibility Laws, Definition

Filial responsibility laws are legal rules that hold adult children financially responsible for their parents’ medical care when parents are unable to pay. More than half of U.S. states have some type of filial support or responsibility law, including:

  • Alaska
  • Arkansas
  • California
  • Connecticut
  • Delaware
  • Georgia
  • Indiana
  • Iowa
  • Kentucky
  • Louisiana
  • Massachusetts
  • Mississippi
  • Montana
  • Nevada
  • New Jersey
  • North Carolina
  • North Dakota
  • Ohio
  • Oregon
  • Pennsylvania
  • Rhode Island
  • South Dakota
  • Tennessee
  • Utah
  • Vermont
  • Virginia
  • West Virginia

Puerto Rico also has laws regarding filial responsibility. Broadly speaking, these laws require adult children to help pay for things like medical care and basic needs when a parent is impoverished. But the way the laws are applied can vary from state to state. For example, some states may include mental health treatment as a situation requiring children to pay while others don’t. States can also place time limitations on how long adult children are required to pay.

When Do Filial Responsibility Laws Apply?

If you live in a state that has filial responsibility guidelines on the books, it’s important to understand when those laws can be applied.

Generally, you may have an obligation to pay for your parents’ medical care if all of the following apply:

  • One or both parents are receiving some type of state government-sponsored financial support to help pay for food, housing, utilities or other expenses
  • One or both parents has nursing home bills they can’t pay
  • One or both parents qualifies for indigent status, which means their Social Security benefits don’t cover their expenses
  • One or both parents are ineligible for Medicaid help to pay for long-term care
  • It’s established that you have the ability to pay outstanding nursing home bills

If you live in a state with filial responsibility laws, it’s possible that the nursing home providing care to one or both of your parents could come after you personally to collect on any outstanding bills owed. This means the nursing home would have to sue you in small claims court.

If the lawsuit is successful, the nursing home would then be able to take additional collection actions against you. That might include garnishing your wages or levying your bank account, depending on what your state allows.

Whether you’re actually subject to any of those actions or a lawsuit depends on whether the nursing home or care provider believes that you have the ability to pay. If you’re sued by a nursing home, you may be able to avoid further collection actions if you can show that because of your income, liabilities or other circumstances, you’re not able to pay any medical bills owed by your parents.

Filial Responsibility Laws and Medicaid

While Medicare does not pay for long-term care expenses, Medicaid can. Medicaid eligibility guidelines vary from state to state but generally, aging seniors need to be income- and asset-eligible to qualify. If your aging parents are able to get Medicaid to help pay for long-term care, then filial responsibility laws don’t apply. Instead, Medicaid can paid for long-term care costs.

There is, however, a potential wrinkle to be aware of. Medicaid estate recovery laws allow nursing homes and long-term care providers to seek reimbursement for long-term care costs from the deceased person’s estate. Specifically, if your parents transferred assets to a trust then your state’s Medicaid program may be able to recover funds from the trust.

You wouldn’t have to worry about being sued personally in that case. But if your parents used a trust as part of their estate plan, any Medicaid recovery efforts could shrink the pool of assets you stand to inherit.

Talk to Your Parents About Estate Planning and Long-Term Care

If you live in a state with filial responsibility laws (or even if you don’t), it’s important to have an ongoing conversation with your parents about estate planning, end-of-life care and where that fits into your financial plans.

You can start with the basics and discuss what kind of care your parents expect to need and who they want to provide it. For example, they may want or expect you to care for them in your home or be allowed to stay in their own home with the help of a nursing aide. If that’s the case, it’s important to discuss whether that’s feasible financially.

If you believe that a nursing home stay is likely then you may want to talk to them about purchasing long-term care insurance or a hybrid life insurance policy that includes long-term care coverage. A hybrid policy can help pay for long-term care if needed and leave a death benefit for you (and your siblings if you have them) if your parents don’t require nursing home care.

Speaking of siblings, you may also want to discuss shared responsibility for caregiving, financial or otherwise, if you have brothers and sisters. This can help prevent resentment from arising later if one of you is taking on more of the financial or emotional burdens associated with caring for aging parents.

If your parents took out a reverse mortgage to provide income in retirement, it’s also important to discuss the implications of moving to a nursing home. Reverse mortgages generally must be repaid in full if long-term care means moving out of the home. In that instance, you may have to sell the home to repay a reverse mortgage.

Filial responsibility laws could hold you responsible for your parents’ medical bills if they’re unable to pay what’s owed. If you live in a state that has these laws, it’s important to know when you may be subject to them. Helping your parents to plan ahead financially for long-term needs can help reduce the possibility of you being on the hook for nursing care costs unexpectedly.

  • Consider talking to a financial advisor about what filial responsibility laws could mean for you if you live in a state that enforces them. If you don’t have a financial advisor yet, finding one doesn’t have to be a complicated process. SmartAsset’s financial advisor matching tool can help you connect, in just minutes, with professional advisors in your local area. If you’re ready, get started now.
  • When discussing financial planning with your parents, there are other things you may want to cover in addition to long-term care. For example, you might ask whether they’ve drafted a will yet or if they think they may need a trust for Medicaid planning. Helping them to draft an advance healthcare directive and a power of attorney can ensure that you or another family member has the authority to make medical and financial decisions on your parents’ behalf if they’re unable to do so.

Complete Article HERE!

Death doulas help the dying meet their end with affirmation

Death doula Anna Adams sits in an office at Holistic Hospice in San Antonio on Oct. 28, 2020. Just as birth doulas help expectant parents bring new life into the world, end-of-life doulas help the dying cope with their next journey. They help the dying and their survivors face death with empowerment and affirmation instead of fear and anxiety.

By RENÉ A. GUZMAN

Andrea Aycock can only sometimes look at the photos of her hands clasped with her mother’s just before she died in May. But she’ll always cherish the helping hand she got from Anna Adams, an end-of-life doula in San Antonio who preserved that personal moment and so many more for Aycock in her mother’s dying days.

“Anna came and took care of her,” said Aycock, a call center operator in San Antonio. “(She) just mainly comforted me.”

Just as birth doulas help expectant parents bring new life into the world, end-of-life doulas help the dying cope with their next journey. They help the dying and their survivors face death with empowerment and affirmation instead of fear and anxiety.

Also known as death doulas, these trained professionals provide the terminally ill and their families physical and emotional support before, during and after death, the San Antonio Express-News reported. These are nonmedical services that often include relaxation exercises, funeral planning, educating the family on their loved one’s condition and just simple companionship.

Adams sees death awareness becoming more commonplace in the United States in the way that Día de los Muertos (Day of the Dead) celebrations have grown more mainstream and that there are more calls for services of end-of-life doulas.

“Cultures like the Mexican culture that have these beautiful traditions of staying in connection with that (dying) process are so admirable and so beautiful. Doulas want to make sure that is available to all people,” said Shelby Kirillin, an end-of-life doula in Richmond, Va., and program development manager for the International End of Life Doula Association (INELDA) in Jersey City, N.J.

Kirillin sees the rising awareness of death doulas as part of what she calls a “death positive movement,” where more people are getting back to supporting their dying loved ones at home and engaging with their death more up close and personal, much as their ancestors did.

“In the last 100-plus years in our Western culture, that has been taken away from us,” Kirillin said. “How to be with someone who was dying, how to touch them. That was something that we knew how to do.”

INELDA is one of just a handful of death doula organizations in the nation and was launched just five years ago. Co-founder Henry Fersko-Weiss created the first end-of-life doula program in the United States at a New York City hospice in 2003.

Kirillin estimates INELDA has around 40 certified death doulas across the country, yet has trained around 3,000 individuals in death doula care. Many just sign up to learn more about facing death and don’t pursue death doula work, she said, while others branch off to do their own training.

Most death doula services come in three phases.

The first is planning and preparation, which involves getting a terminal patient’s affairs in order and asking some tough questions that call for honest answers. Where does that person want to die? Who do they want present for those final moments? What so they absolutely need to say or do before they’re gone?

Kirillin said that first phase often addresses the dying individual’s regrets and unfinished business, as well as any advance directives, wills, etc. Often referred to as “legacy work,” such planning makes it easier for family to understand and respect the dying person’s wishes.

Fran Morgan is in that early stage with her dying mother Rosalee, who receives hospice care at the private residence of a family friend.

“With Anna in the picture, she will be advocating for all of the things that need to happen,” said Morgan, a retired telecommunications company manager in San Antonio. “It will release me from those responsibilities, and I can just be with my mom and cherish those final moments.”

That second phase is called the vigil, usually the last four or five days of the dying person’s life where end-of-life doulas and family members spend more time at their bedside.

“I call them my angel vigils,” Adams said.

During her doula vigils, Adams, 38, often creates a soothing space for the dying with soft music and dim lighting. Sometimes she’ll add a favorite scent with aromatherapy. Most times, she just gently massages her client’s arms and holds their hands.

And in those final moments as they take their last breaths, Adams comforts them with what they most want to hear, be it Bible verses, soothing music or just someone to say it’s going to be OK.

The final phase of a death doula’s work addresses survivors’ grief. Kirillin said that involves circling back with the family a few weeks after their loved one’s death to check on their emotional well-being.

Kirillin stressed that end-of-life doulas do console families, but are not licensed grief counselors and will refer families to such resources if necessary.

When it came to caring for Aycock’s mother, Adams mostly helped with her bedside care and keeping her visiting nurses on task. Adams also explained to Aycock any of her mother’s diagnoses she didn’t understand.

Then there was that time Adams took those hand photos of Aycock and her mother. Difficult as it is for Aycock to look at those photos, much less share them, she still holds them close.

She holds Adams’s work even closer.

“It is the best help that you can get,” Aycock said. “They provide comfort not only for your loved one that is going through the transition, but for you.”

Morgan expects to experience more of that care from Adams. “I’m looking forward to the relationship that we’re going to have,” said Morgan, who started working with Adams around three weeks ago. “For now my initial experience (and) impression is she certainly has the heart for what she’s doing.”

Adams’s first experience comforting the dying came when she was 16. Fresh from certification as a nursing aid, Adams tended to a best friend’s cousin for several months at her home with bathing and conversation. That care continued when that cousin transferred to hospice care and well up to her death.

“So we just had a bonding moment. I gave her that sacred zone,” Adams said. “That kind of piqued my interest.”

Adams went on to pursue a career in hospice, then for the last four years worked as an EMS manager and dispatcher for a private company. But something pushed her back into working with the dying.

“I told my family, ‘God wants me to do this. God is keeping me in line with this,’ ” Adams said.

At the start of this year, Adams got her end-of-life doula certification. Then over the summer, she partnered with fellow certified doula Sonja Koenig to launch TX Doula Movement, an online training and certification course for death doulas, senior care doulas and doula consultants.

Adams knows of just a handful of death doulas in San Antonio right now, but she expects that number to double later this year when around five of her TX Doula Movement students complete their certification. Adams plans to launch her own doula training service next year.

Adams said the coronavirus has not deterred her from her work, save for having to incorporate more video consultations with families and masks and frequent hand-washings during visits. She has yet to provide end-of-life doula services to someone with COVID-19, but one of the hospice companies she works with takes in COVID-19 patients.

“I don’t have a problem working with COVID patients,” Adams said.

Adams said most hospitals still don’t work with death doulas, but hospice services are slowly warming up to them as adjuncts to their own care.

“It is relatively new, but we’re seeing it more,” said Rachel Hammon, executive director of the Texas Association for Home Care & Hospice in Austin.

Holistic Hospice Care is one of two hospice centers in San Antonio that works with Adams. Administrator Erica Sandoval said Adams has been a welcome bridge between families and clinical teams.

“She can get on (everyone’s) level,” Sandoval said. “And she’s very calm and very patient. And she just wins their trust and they feel very comfortable with her.”

Like Adams, Sandoval, too, sees parallels between death doulas and Día de los Muertos, such as the memory books the doulas make for their clients and the Day of the Dead tribute altars families make for their lost loved ones.

“I definitely think that there’s a good association to that because they are (both about) wanting you to cherish their memories and enjoy the last moments and everything that you can remember of the individual,” Sandoval said.

Complete Article HERE!

‘Dear Life’ explores the beauty of end-of-life experiences

By Terri Schlichenmeyer

Before the doctor opened her mouth, you knew this wasn’t going to be good.

And it wasn’t, although you can barely remember what happened a minute after you heard the diagnosis. All you could wrap your head around were monitors and tubes and machines and death, when what you needed was “Dear Life” by Rachel Clarke, and a reminder that it wasn’t time for that yet.

When she was a little girl, Rachel Clarke was in awe of her father, a doctor who loved music and nature and who shared his sense of curiosity with his children. As a teen, Clarke toyed with the idea of following in his footsteps, but she chose a career in television instead. And then one day, after experiencing a couple of close brushes with death, she decided to go back to school to become a doctor, specializing in palliative medicine.

“I learned that dying, up close, is not what you imagine,” she says. “It is the essence of living… that really matters…”

About death, there are two main things: unlike our ancestors, we aren’t used to it; and we can’t know what it’ll be like. These are what Clarke helps her patients and their families deal with, and while she can’t answer the latter question, she promises them that the days and hours before the end are as full of life as possible.

Sometimes, that means meeting fears head-on, and discussing death matter-of-factly. Sometimes, it’s asking questions of a patient because no one else has done so. Caring for someone who’s dying may mean literally opening a window to sunshine or birdsong, holding a hand, letting “a wife curl up in a hospital bed beside her dying husband,” or encouraging a visit from a pet or a beloved grandchild. And sometimes, a doctor just needs to remember that “There is always a spark of beauty or significance…in the life you have left,” even when the person dying is someone the doctor loves.

This year, no doubt, you’ve seen enough death to last several lifetimes, and you’re not sure you can withstand a book about it right now.

But hold on, because “Dear Life” lives up to its title.

Beautiful, thoughtful, and loving, this book is absolutely brimming with life as author Rachel Clarke describes the end-of-life care offered at the hospice where she works and some of the most memorable patients to whom she ministered care.

If that sounds like an anti-life book, well, it’s not. It’s true that people die in this book, and they do it often but Clarke’s accounts of their days prior to death are quiet and serene, with no fear, no pain, and the minimum of loose ends left. Her workplace is not a sterile, clinical home where people go to die; rather, it’s a place where people die but first, happiness sneaks in sometimes.

And for that, curiously, this book on death-and-life may be the balm your COVID-bruised mind needs now. Indeed, calm, truthful, and not too gory, “Dear Life” is good.

Another book to look for is “Grief: The Biography of a Holocaust Photograph” by David Shneer. It’s the story of a photo taken toward the end of World War II, and the emotion inside it. Part meditation, part history, this book is perfect for the historian, too.

Complete Article HERE!

Grieving Before A Death

— Understanding Anticipatory Grief

By Litsa Williams

I spent a lot of time with my grandmother when I was growing up. When I was young, before I started school, my grandmother watched me while my parents worked. I have many fond memories of walking the alleys by her house to the playground, helping her stuff grape leaves and roll cookies, playing the piano, painting our nails together, watching All My Children, and eating her delicious lentil soup.

But let me back up a bit. Long long before that, when my mother was just a twinkle in her father’s eye, my grandparents emigrated to the United States from Greece. They did what most good Greeks did: they opened a restaurant and they had children. But life did what life does sometimes – it took my grandfather way too soon, leaving my grandmother a widow with two elementary-school aged children. My grandmother ran the restaurant on her own, raising her two children in an apartment upstairs. A vision of the American Dream, she sent her children off to college, one to the Ivy League, and one at the top of her class through college and pharmacy school. In her retirement my grandmother moved to Baltimore. She stayed busy as a church volunteer and as a babysitter to her grandchildren. In her eighties she was still spending twelve hour days at the Greek Festival making loukoumades and selling pastries.

In her late eighties my grandmother had a stroke. The years that followed brought dementia that slowly took away the fiercely independent woman we knew. She was a version of my grandmother, a woman who was still kind, who still prayed, and who still loved having her nails painted. But this version of my grandmother spoke less and less, came in and out of awareness, had to be reminded who we were, and could no longer care for herself.

When my grandmother died just shy of her 95th birthday in 2004 I am not sure I had ever heard the words ‘anticipatory grief’. And yet I remember so well thinking that we had been saying goodbye over the past six years, as she had slowly slipped away. Though she had still been with us in body, we had been slowly mourning the loss of her personality, her independence, her memory, and her awareness for years. Remembering who she had been, it was like we had been watching her fade away.

Anticipatory Grief: the nitty gritty

Here is the thing about grief – though we think of it as something that happens after a death, it often begins long before death arrives.  It can start as soon as we become aware that death is a likelihood. Once death is on the horizon, even just as a possibility, it is natural that we begin to grieve.

Though this is different than the grief that follows a death, anticipatory grief can carry many of the symptoms of regular grief – sadness, anger, isolation, forgetfulness, and depression. These complicated emotions are often coupled with the exhaustion that comes with being a caregiver or the stress of being left alone when someone goes to war or is battling addiction. We are aware of the looming death and accepting it will come, which can bring an overwhelming anxiety and dread. More than that, in advance of a death we grieve the loss of person’s abilities and independence, their loss of cognition, a loss of hope, loss of future dreams, loss of stability and security, loss of their identity and our own, and countless other losses. This grief is not just about accepting the future death, but of the many losses already occurring as an illness progresses.

When we know a death is imminent our bodies are often in a state of hyper-alertness – we panic whenever the phone rings, an ambulance must be called, or when our loved one deteriorates. This can become mentally and physically exhausting.  The same is true of watching a loved one suffer, which is almost always part of a prolonged illness. Caring for them as they suffer takes an emotional toll on us. These things (and others) can contribute to a sense of relief when the death eventually comes, and a guilt that can come with that relief. These feelings are common and totally normal when someone has experienced an anticipated death. And yet we feel guilty for this relief, thinking it diminishes our love for the person. It doesn’t, of course, but this relief can be a confusing feeling. We sometimes need to consciously remind ourselves that the relief does not change the deep love we had for the person, rather it is a natural reaction to the illness.

There have been numerous studies showing that anticipatory grief can reduce the symptoms of grief after a death but, as always with grief, there are no rules. There will be times that anticipatory grief may reduce the intensity of grief following a loss, then there are many times that the grief following a death is not impacted at all. For a great review of the research on anticipatory grief (and understanding of why much of the data conflicts), see this article by Reynolds and Botha. What is important to keep in mind is that if you are grieving with less intensity or for shorter duration than other losses because of the anticipatory grief you experienced before the death, that is totally normal! On the flip side, if you do not feel your grief is diminished despite it being an anticipated death, that is totally normal too! Convenient, eh? There is no formula for how an anticipated loss will impact us because we all grieve differently.

Things to Remember When Dealing with Anticipatory Grief

  1. Accept that anticipatory grief is normal. You are normal and feeling grief before a death is normal.  You are allowed to feel this type of grief. Seriously. This is a common phenomenon that has been documented for nearly a century.  You are not alone!
  2. Acknowledge your losses. People may say annoying things like, “at least your mom is still here” that minimize what you are experiencing. Allow yourself to acknowledge that, though the person hasn’t died, you are grieving. Consider journaling, art, photography, or other creative outlets to express the emotions around things like acceptance of the impending death, loss of hope, loss of the person you once knew, loss of the future you imagined, etc. Explore mindfulness (we have a post on that here) as a way of being present and aware of the many emotions your are coping with.
  3. Connect with others. Anticipatory grief is common among caregivers, but unfortunately when all your time is consumed with caregiving you may feel totally alone and isolated. Seek out caregiver support groups, either in your area or online, so you can connect with others who understand the challenges you are facing, including anticipatory grief. There is an online anticipatory grief forum that is active here if you are looking for online support.
  4. Remember that anticipatory grief doesn’t mean you are giving up. As long as you are there for support, you are not giving up on a family member or friend. There comes a time where we often accept that an illness is terminal and that recovery is no longer a possibility. Though it is a reality, there can be a feeling of guilt that comes with that acceptance. Focus on what you are doing – still supporting, caring, loving, creating meaningful time together, etc. You are shifting your energy from hope for recovery to hope for meaningful, comfortable time together.
  5. Reflect on the remaining time. Consider how you and your loved one will want to spend that time together. Though what we want may not always be possible, do your best to spend your remaining time together in a way you and your loved one find meaningful. If your loved one is open to it, you may want to discuss practical matters, like advance directives and funeral arrangements to ensure that you are able to honor their wishes (rather than being stuck having to guess what they would have wanted).
  6. Communicate. Just like we all grieve differently, anticipatory grief is different for everyone. Expect that everyone in your family may be experiencing and coping with anticipatory grief in different ways. Keeping the lines of communication open can help everyone better understand one another. If you are planning for the remaining time to be meaningful and comfortable, make sure to include all the important family members and friends in those discussions.
  7. Take care of yourself. I know, vague and way easier said than done!! But it is true. Check out our posts on self-care (for normal people), yoga, and meditation for some ideas of ways to take care of yourself. Remember the old cliché, you can’t take care of others if you don’t take care of yourself.
  8. Take advantage of your support system. Caregiving and anticipatory grief can be a long road. Do an assessment of your support systems so you know which people may be able to help you out (and who you may want to avoid!). We have a great support system superlative journaling activity to help you out with your assessment here.
  9. Say yes to counseling! I know, there are still some of you out there who may think counseling is just for wackadoos. I am here to tell you that is just not true! Counseling is helpful for normal, everyday people who just need a place to process complicated emotions and have some you-time. So just say yes to counseling if you are feeling overwhelmed with the feelings of anticipatory grief. You can check out our post on finding a counselor here.
  10. Relief is normal. In the case of anticipated loses there can be months, years, and even decades of caregiving that can be overwhelming and exhausting (though adjectives don’t even seem like enough!). When someone dies there can be a sense of relief that is completely normal, but that can also create feelings of guilt. Remember that feeling relief after an anticipated death does not mean you loved the person any less. It is a normal reaction after a stressful and overwhelming time in your life.
  11. Don’t assume. Just because your loss was an anticipated loss, do not assume this will either speed up or slow down your grief after the death. We have said it before and we will say it again: we all grieve differently.

What to Do When a Loved One Dies

Advice to keep a sad event from becoming even more painful

By Consumer Reports

Responsibility for the various actions can be divided among family members and close friends of the deceased.

Immediately

1. Get a legal pronouncement of death. If no doctor is present, you’ll need to contact someone to do this.

  • If the person dies at home under hospice care, call the hospice nurse, who can declare the death and help facilitate the transport of the body.
  • If the person dies at home unexpectedly without hospice care, call 911. Have in hand a do-not-resuscitate document if it exists. Without one, paramedics will generally start emergency procedures and, except where permitted to pronounce death, take the person to an emergency room for a doctor to make the declaration. Keep in mind that do-not-resuscitate laws vary at the state level and if a person does not want to be resuscitated, “calling 911 is not necessary” according to the National Institute on Aging. “If the death is not unexpected, you might call the individual’s physician first,” says Lori Bishop, vice president of palliative and advanced care at the National Hospice and Palliative Care Organization.
  • 2. Arrange for transportation of the body. If no autopsy is needed, the body can be picked up by a mortuary (by law, a mortuary must provide price info over the phone if you ask for it) or crematorium.

    3. Notify the person’s doctor or the county coroner.

    4. Notify close family and friends. (Ask some to contact others.)

    5. Handle care of dependents and pets.

    6. Call the person’s employer, if he or she was working. Request info about benefits and any pay due. Ask whether there was a life-insurance policy through the company.

    Within a Few Days After Death

    7. Arrange for funeral, memorial service, and burial or cremation. Search the person’s documents to find out whether there was a prepaid burial plan. Ask a friend or family member to go with you to the mortuary. Prepare an obituary.

    8. If the person was in the military or belonged to a fraternal or religious group, contact that organization. It may have burial benefits or conduct funeral services.

    9. Secure the person’s home. Or ask a friend or relative to keep an eye on it, answer the phone, collect mail, throw food out, water plants, and keep minimal heat on to avoid frozen pipes if it’s winter in a colder climate.

    Up to 10 Days After Death

    10. Obtain the death certificate (usually from the funeral home). Get multiple copies; you’ll need them for financial institutions, government agencies, and insurers.

    11. Take the will to the appropriate county or city office to have it accepted for probate. Check your state’s laws, which may require you to file the will within a set period of time.

    12. If necessary, the estate’s executor should open a bank account for the deceased’s estate.

    13. Contact the following:

    • A trust and estate attorney, to learn how to transfer assets and assist with probate issues.
    • Police, to have them periodically check the deceased’s house if vacant.
    • An accountant or a tax preparer, to find out whether an estate-tax return or final income-tax return should be filed.
    • The person’s investment adviser, if applicable, for information on holdings.
    • Banks, to find accounts and safe deposit box.
    • Life insurance agent, to get claim forms.
    • The Social Security Administration (800-772-1213; ssa.gov) and other agencies from which the deceased received benefits, such as Veterans Affairs (800-827-1000; va.gov), to stop payments and ask about applicable survivor benefits. The SSA, like the VA, recommends immediately reporting the person’s death, though in many cases the funeral home will handle this.
    • Agency providing pension services, to stop monthly checks and get claim forms.
    • Utility companies, to change or stop service, and Postal Service, to stop or forward mail. Reach out to other companies to stop recurring bills and subscriptions. If home is vacant, contact the insurer to switch to a vacant policy. If home is under a mortgage, contact the lender.
    • The IRS, credit-reporting agencies, and the DMV to prevent identity theft.
    • Social media companies, such as Facebook or LinkedIn, to memorialize or remove an account.

    Know the Person’s Wishes

    For an elderly friend or relative:

    • Know the location of the will, birth certificate, marriage and divorce certificates, Social Security information, life-insurance policies, financial documents, and keys to safe deposit box or home safe. Ask the person to create an inventory of their digital assets (such as email, social networks, and digital files) and include a plan for these assets in their will.
    • Ask about the person’s wishes concerning funeral arrangements, organ and brain donation, and burial or cremation.
    • Have the person complete an advance directive, including a living will, which specifies wanted and unwanted procedures. The person should also appoint a healthcare proxy to make medical decisions if he or she becomes incapacitated. Some who are more seriously ill might also consider a Physician Orders for Life-Sustaining Treatment in addition to an advance directive.
    • Ask the person about end-of-life care, such as palliative and hospice care (which have key differences), and what their insurance will cover. Medicare, which covers most elderly Americans, will cover hospice care. Palliative care is growing in popularity, but “keep in mind that anyone with six months or less to live should have access to hospice,” Bishop says.
    • Have a do-not-resuscitate order drawn up if the person desires. That tells healthcare professionals not to perform CPR if the person’s heart or breathing stops and restarting would not result in a meaningful life.
    • Make sure the person gives copies of the documents to his or her doctor and a few family members or friends. Take the documents to the hospital if the person is admitted.

    Complete Article HERE!