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They knew their unborn baby would die — just not like this

Royce Young and his wife, Keri, meeting their daughter, Eva, after she was stillborn.

By Lindsey Bever

[F]or Royce Young, writing their story was not only a way to work through it, he said, but also a way to remember it.

Nearly five months ago, Young and his wife, Keri, found out that their unborn daughter had a rare birth defect called anencephaly, a condition in which the baby does not develop a vital part of the brain or top of the skull.

If their daughter was born, she would die all too soon. If the pregnancy were terminated, she would not live at all.

So the grief-stricken parents made a decision: Their daughter would be born — then they would donate her organs.

“We decided to continue, and chose the name Eva for our girl, which means ‘giver of life,’” Young, an NBA writer for ESPN.com, wrote Thursday on the blog Medium. “The mission was simple: Get Eva to full-term, welcome her into this world to die, and let her give the gift of life to some other hurting family.”

But Eva died before she ever made it into the world.

Young, a 31-year-old father from Oklahoma City, wrote a gripping and gut-wrenching 3,200-word article titled “We spent months bracing and preparing for the death of our daughter. But guess what? We weren’t ready.”

From the start, Young said, he and his wife had planned to document every moment of their newborn’s life, no matter how short it turned out to be — introducing her to her big brother, Harrison, and her grandparents, and holding, hugging and kissing her for the first and last time.

After Eva was tragically and unexpectedly stillborn on April 17, Young said he wanted to share their daughter’s legacy.

So he did — and his post has swept the Internet.

“It’s neat to see that our little girl, that people know her name,” Young told The Washington Post on Friday. “Her legacy is something that’s impactful.”

[‘We had no hope’: The amazing story of the baby born with his brain outside his skull]

Not long after the Youngs learned of their daughter’s terminal diagnosis late last year, Young said he started writing about his wife, Keri — how “tough” she was through it all.

In February, while covering the NBA All-Star Weekend in New Orleans, Young said, he posted it on his Facebook page. Someone shared it, and the couple ended up on ABC’s “Good Morning America.”

People knew about the Youngs’ wishes for Eva. And when she was stillborn this month, some mistakenly thought they had been successful in their mission.

“People kept reaching out to us after we said that Eva was born and that she had passed away,” Young told The Post. “People were like, ‘That’s amazing; I bet she saved so many lives.’ And to know how it actually happened, with her dying in Keri’s womb and everything and us not being able to donate her kidneys or liver, it was kind of getting more and more depressing to see people thinking that’s what happened.”

Young wrote in the Medium piece about the sorrow he felt watching his wife carry their dying child to term as well as the unexpected joys of the pregnancy.

“We got excited to be her parents,” he wrote. “I think a big part of that was connected to the decision we made to continue on, which was empowering. She had a name, an identity, and a purpose.”

And Young wrote about the tragic moment the couple discovered that their daughter had died in the womb:

On Sunday, April 16, the day Keri officially hit full-term at 37 weeks, suddenly, we were in the two-week window. In two weeks, we’d be prepping to welcome our baby girl into the world, and preparing to say goodbye to her. I planned on sitting down that day to write Eva a letter, like I did before Harrison was born, to give him on his 18th birthday. She’d never read it, but I was going to read it to her. Keri didn’t feel Eva move much that morning, but we both brushed it off and went to lunch. We came home, put Harrison down for a nap, and Keri sat down in her favorite spot and prodded Eva to move. She wouldn’t.

We started to worry. Keri got up, walked around, drank cold water, ate some sugary stuff. She sat back down and waited. Maybe that was something? We decided to go to the hospital.

“This is going to be bad, isn’t it?” I said.

Keri erupted into tears and her body shook. I had my answer.

We held on to hope that we were just being overly anxious, and didn’t take any bags. We arrived, and a nurse looked for a heartbeat on the doppler. Nothing. Not unusual because it was sometimes hard to find because of the extra fluid. They brought in a bedside ultrasound machine and looked. It seemed that maybe there was a flicker of cardiac activity. They told us to get ready to rush in for a C-Section. I freaked out. I just remember repeating, “I’m not ready I’m not ready I’m not ready I’m not ready.” I was supposed to have two more weeks. What about the plan? What about Harrison? What about Eva’s aunts and uncles and grandparents? What if they couldn’t make it in time? …

They brought in a better ultrasound machine. Keri and I had seen enough ultrasounds to immediately know. There was no heartbeat. Eva was gone before we ever got to meet her. The brain controls steady heart functions, and Eva’s finally gave out.

Keri rolled onto her side and put both hands over her face and let out one of those raw, visceral sobbing bursts. I stood silently shaking my head. We had tried to do everything right, tried to think of others, tried to take every possible step to make this work, and it didn’t. No organ donation. Not even for the failsafe, research. We felt cheated. What a total rip-off. The word I still have circling in my head is disappointment. That doesn’t really do it justice, because it’s profound disappointment. Like the kind that’s going to haunt me forever. The kind of disappointment that is going to sneak up on me at different times, like when I’m mowing the yard or rocking Harrison or driving to a game.

Since there was no reason to control variables anymore, the doctors induced Keri into labor. The rest of Sunday and into Monday morning were the darkest, most painful hours of our lives.

In the end, Young wrote, he and Keri were able to donate their daughter’s eyes, which he called “the best moment of my life.”

“The timing of it all is just something I can’t explain,” he wrote on Medium. “It wasn’t what we planned or hoped for, but it was everything we needed in that moment. I buried my head in my arms and sobbed harder than I ever have. Keri put her hands over her face and did the same. Happy tears.”

Young told The Post that this had been “the most painful, excruciating five months of my life” but that he has no regrets.

“This is something that’s life-defining, and I think Keri and I feel like we’re going to be better for it,” he said. “That’s something people often say: ‘I’m so glad this happened to me. I’m going to be a better person now.’ But I wish this had not happened to me. I wish that I had a perfectly healthy daughter right now to hold, and I wish my son, Harrison, had a little sister. And it kills me that we had to go through this, but the main thing we wanted to try to do is regret as little as we could, and when Keri and I are 40 or 50 years old, I hope we can say we handled this the best we could given the circumstances.”

The Youngs.

Complete Article HERE!

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How to have a better death

Death is inevitable. A bad death is not

[I]N 1662 a London haberdasher with an eye for numbers published the first quantitative account of death. John Graunt tallied causes such as “the King’s Evil”, a tubercular disease believed to be cured by the monarch’s touch. Others seem uncanny, even poetic. In 1632, 15 Londoners “made away themselves”, 11 died of “grief” and a pair fell to “lethargy”.

Graunt’s book is a glimpse of the suddenness and terror of death before modern medicine. It came early, too: until the 20th century the average human lived about as long as a chimpanzee. Today science and economic growth mean that no land mammal lives longer. Yet an unintended consequence has been to turn dying into a medical experience.

How, when and where death happens has changed over the past century. As late as 1990 half of deaths worldwide were caused by chronic diseases; in 2015 the share was two-thirds. Most deaths in rich countries follow years of uneven deterioration. Roughly two-thirds happen in a hospital or nursing home. They often come after a crescendo of desperate treatment. Nearly a third of Americans who die after 65 will have spent time in an intensive-care unit in their final three months of life. Almost a fifth undergo surgery in their last month.

Such zealous intervention can be agonising for all concerned (see article). Cancer patients who die in hospital typically experience more pain, stress and depression than similar patients who die in a hospice or at home. Their families are more likely to argue with doctors and each other, to suffer from post-traumatic stress disorder and to feel prolonged grief.

What matters
Most important, these medicalised deaths do not seem to be what people want. Polls, including one carried out in four large countries by the Kaiser Family Foundation, an American think-tank, and The Economist, find that most people in good health hope that, when the time comes, they will die at home. And few, when asked about their hopes for their final days, say that their priority is to live as long as possible. Rather, they want to die free from pain, at peace, and surrounded by loved ones for whom they are not a burden.

Some deaths are unavoidably miserable. Not everyone will be in a condition to toast death’s imminence with champagne, as Anton Chekhov did. What people say they will want while they are well may change as the end nears (one reason why doctors are sceptical about the instructions set out in “living wills”). Dying at home is less appealing if all the medical kit is at the hospital. A treatment that is unbearable in the imagination can seem like the lesser of two evils when the alternative is death. Some patients will want to fight until all hope is lost.

But too often patients receive drastic treatment in spite of their dying wishes—by default, when doctors do “everything possible”, as they have been trained to, without talking through people’s preferences or ensuring that the prognosis is clearly understood. Just a third of American patients with terminal cancer are asked about their goals at the end of life, for example whether they wish to attend a special event, such as a grandchild’s wedding, even if that means leaving hospital and risking an earlier death. In many other countries, the share is even lower. Most oncologists, who see a lot of dying patients, say that they have never been taught how to talk to them.

This newspaper has called for the legalisation of doctor-assisted dying, so that mentally fit, terminally ill patients can be helped to end their lives if that is their wish. But the right to die is just one part of better care at the end of life. The evidence suggests that most people want this option, but that few would, in the end, choose to exercise it. To give people the death they say they want, medicine should take some simple steps.

More palliative care is needed. This neglected branch of medicine deals with the relief of pain and other symptoms, such as breathlessness, as well as counselling for the terminally ill. Until recently it was often dismissed as barely medicine at all: mere tea and sympathy when all hope has gone. Even in Britain, where the hospice movement began, access to palliative care is patchy. Recent studies have shown how wrongheaded that is. Providing it earlier in the course of advanced cancer alongside the usual treatments turns out not only to reduce suffering, but to prolong life, too.

Most doctors enter medicine to help people delay death, not to talk about its inevitability. But talk they must. A good start would be the wider use of the “Serious Illness Conversation Guide” drawn up by Atul Gawande, a surgeon and author. It is a short questionnaire designed to find out what terminally ill patients know about their condition and to understand what their goals are as the end nears. Early research suggests it encourages more, earlier conversations and reduces suffering.

These changes should be part of a broad shift in the way health-care systems deal with serious illness. Much care for the chronically ill needs to move out of hospitals altogether. That would mean some health-care funding being diverted to social support. The financial incentives for doctors and hospitals need to change, too. They are typically paid by insurers and governments to do things to patients, not to try to prevent disease or to make patients comfortable. Medicare, America’s public health scheme for the over-65s, has recently started paying doctors for in-depth conversations with terminally ill patients; other national health-care systems, and insurers, should follow. Cost is not an obstacle, since informed, engaged patients will be less likely to want pointless procedures. Fewer doctors may be sued, as poor communication is a common theme in malpractice claims.

One last thing before I go
Most people feel dread when they contemplate their mortality. As death has been hidden away in hospitals and nursing homes, it has become less familiar and harder to talk about. Politicians are scared to bring up end-of-life care in case they are accused of setting up “death panels”. But honest and open conversations with the dying should be as much a part of modern medicine as prescribing drugs or fixing broken bones. A better death means a better life, right until the end.

Complete Article HERE!

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Where Do I Go To Mourn?

By Ariele Mortkowitz

[T]he Jewish tradition is rich with mourning rituals. We’ve done it as a nation for millennia; mourning the loss of Jerusalem, lamenting the Holocaust, remembering the long lost days of the Holy Temple. As individuals, we do it with bagels and covered mirrors and week-long shiva visits. We can say Kaddish (the mourner’s prayer) for a year. There is plenty of space and opportunity to grieve.

And it’s a good thing. A great thing even. It’s supportive. It’s community showing up at times when someone might be at their lowest low. It’s not leaving people to manage their grief alone. It’s a built-in system of shoulders to cry on, arms to lean on, caretakers, yentas – all of them creating a space for you to mourn and pause before gathering strength to move forward.

But while we offer so much to mourn those who have passed, there is nothing available to support those mourning pregnancy loss. There are no rituals. No one brings bagels. No one even talks about it. Some rabbis will tell you that you are not even permitted to say Kaddish after a stillbirth. It’s like it never happened.

And there’s a logical reason for that. In times long ago, pregnancy loss was incredibly common. It was also often very public. It was rare to find a family that had not lost a child or infant in the course of their family-building. In fact, many parents lost more than one in their lifetimes. So if the custom would have been to stop everything to mourn, people would have been in states of mourning constantly. And one could say that therapeutic value of shiva/mourning rituals would be diluted. The rabbis, in their wisdom, thought it better to not make such a big deal of pregnancy loss – precisely because it was so common.

But what about today? 2017. When pregnancy loss is not something that happens as often in each family? And certainly not in the same public way it did in olden times? What do we do with these feelings of loss that can be so devastating – particularly in the midst of communities that value children so highly?

Where should a couple take their grief when they learn that they will not be able to be parents? How should a mother-to-be mourn the loss of a life that she cherished? What prayer should she say? There is no ritual. No one talks about it openly because of the attached shame and disappointment of not being a “fruit bearer.”

It’s rough. It’s lonely. And it is incredibly sad.

It is ironic that a faith community that is normally so very good at supporting individuals laden with grief, can fail so terribly at addressing this common and natural loss.

I know of more than a few synagogue regulars who stopped attending services and recuse themselves from the ebb and flow of Jewish communal life after a miscarriage or when they continue to fail to conceive. With no “official” way to mourn a pregnancy loss or a fertility struggle, it can be incredibly isolating and “othering” for couples — often pushing people away from their communities during the very time they need support most. They feel not understood, invalidated, wrong for being so heartbroken. The absence of ritual or commemoration of pregnancy loss sends a message loud and clear: “Your loss is not a real loss. It is not worthy of the community’s attention or caring.”

Ouch.

So we wanted to do something about that. We wanted these important community members to feel held and supported and we wanted to validate their loss and let them know that they are not alone in their grief.

This month, we participated in Yesh Tikva/The Red Stone’s “Infertility Awareness Shabbat” in an unusual way. Our goal was to create a space for empathy and understanding about infertility in the very tight-knit, family-focused Jewish community. But, rather than ask our clergy to talk about infertility or pregnancy loss in a sermon as has been traditional, we decided to do something new.

On the Sabbath before Passover, the Agam Center at Ohev Sholom invited the entire community to “Light A Candle For Your Loss.” We circulated an anonymous form and asked our community members to indicate the number of memorial candles they would like illuminated on their behalf and gave them the option to have their candles dedicated or labeled in the manner of their choosing.

The response from the community was overwhelming. We lit forty-seven candles, submitted anonymously by thirty individuals – just from our 300 family congregation alone. We displayed these candles publicly, at the entrance to our sanctuary, in our light-filled atrium. Every community member passed by the memorial display on their way into services, and our clergy, Maharat Ruth Balinsky Friedman, invited the community to pay their respects and honor the (often silent) loss felt deeply among our grieving community members.

The responses from the community came pouring in.

“Thank you for doing this. Don’t really have words right now. Just gratitude to have the opportunity to mark my little boy’s birth, especially so close to the actual date.”

“This is absolutely beautiful. Thank you for giving a voice to so many who are on this journey. All my love and support for your amazing, very necessary work.”

“I thought I’d fill out the form because it was a lovely idea – and then found myself in tears, making a small space for something I mostly push aside. Kudos to you for creating the holy opportunity. Really proud to be a part of this community.”

As far as I know, our decision to publicly anonymously recognize pregnancy loss in the synagogue community is a unique endeavor to validate this loss and create a space for a life-experience that can be so isolating and stigmatized and reframe it as an opportunity for communal support.

As we filed into the sanctuary for Saturday morning services, we stopped to read the inscriptions and dedications next to the memorial candles. They took my breath away. Here is but a sample of what was shared:

“I would have loved to love you.”

“Eternally grateful for the journey you were a part of, as painful as it has been. Your loss made way for those we watch grow, shaping me into a mother who strives for daily patience and gratitude.”

“Mothers Day 2011. You were and then you weren’t. Still wonder why I wasn’t supposed to be your mommy.”

“For the family I thought we’d have and the empty seat at our table that I wish we had filled.”

The Agam Center is working hard to make people feel seen and understand that their community is indeed there for them during their time of sorrow or struggle. We want to help people in the midst of a fertility journey see that they are truly not alone, and that there have been so many others – even right in their very synagogue community – who have walked this path with them. We are creating a space to mourn something that is usually so privately painful – particularly in a tradition that is, ironically, so “good” at supporting mourners in other circumstances. I am hopeful that we can begin to highlight ways that communities can create spaces for these losses and families unrealized.

Rather than staying home and feeling isolated, these mourning couples made a point to come to synagogue that week and watched as others learned about and began to appreciate the magnitude of the loss they were feeling. They came inside from standing on the fringe of the community and felt embraced and found solidarity, all without a word. This heartbreakingly beautiful display was our community’s way to show that all loss is real loss and to remind those still struggling that they are not alone in their grief of hopes for the family of their prayers.

May our communities know no more suffering. Amen.

Complete Article HERE!

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Lap of Love brings end-of-life care to pet owners’ homes

Steven Schultz, DVM, of Lap of Love project, and owner Robyn Eckhardt with her dog Gemma during a check-up on the lawn of Eckhardt’s Lockport home on Monday, April 17, 2017.

By Anne Neville

[T]he end of a pet’s life can be difficult for the animal and for its people.

But an innovative approach to those final months, weeks or even hours is easing the way for both people and their beloved cats and dogs. Lap of Love mobile veterinary hospice care has been offered in Western New York since 2014 by a longtime Lockport veterinarian.

Dr. Steven M. Schultz provides both home hospice care for dogs and cats with any terminal diagnosis, care that can go on for months, and gentle at-home euthanasia. And Schultz said the gratitude of the people whose pets he cares for eases the burden of what could be a depressing job.

“What we are doing is so much less stressful for the pets,” said Schultz. “They’re at home, they’re relaxed, we’re relieving their pain and suffering. People, especially the elders, are so appreciative that we come to their homes, they don’t have to put their little cats in a carrier and haul them off to the vet, which is totally stressful, or try to get their big dogs into a car and get them to the vet because they can’t walk anymore.”

“End of life for our pets is a heartbreaking and extremely difficult time,” said Robyn Eckhardt of Lockport, whose 17-year-old dog, Gemma, a Lab-border collie mix, has been Schultz’s hospice patient for more than a year. “Dr. S. is the perfect vet for this. If we can help our pets go peacefully, without unnecessary stress on them – and you, which your pet can pick up on – it is better for everyone.”

The concept of veterinary hospice, which involves providing pain relief and life-improving measures for pets, rather than surgery, chemotherapy or other drastic treatments, is relatively new.

“Years ago, the concept of the human-animal bond was quite different than it is today,” said said Kathryn Jennings, executive director of the International Association of Animal Hospice and Palliative Care, a nonprofit that was founded nine years ago in Chicago. “Today, people are doing more for their pets when it comes to diagnosis and treatment. So when we’re looking at end-of-life, people also want to have more services available.”

Schultz dealt with many animal health issues that sometimes included serious illness and death at Countryside Veterinary Clinic in Lockport, which he operated for almost 30 years before selling the practice in 2012.

“By sheer coincidence,” he said, he and his wife, Sara, who have three adult children, sold their house at the same time. “So I said, let’s go out on the road,” he said.

During their travels, including a stay in the Virgin Islands and Texas, Schultz learned about two young veterinarians in the Tampa area, Dani McVety and Mary Gardner, who had started a hospice and in-home euthanasia practice called Lap of Love. “I said, ‘We could really use something like that in the Buffalo area,’ ” he said.

In 2014, after returning to Western New York, Schultz opened the local branch of Lap of Love, becoming the first in New York State to offer the group’s specialized services.

Schultz began reaching out to other local veterinarians to inform them of his new specialty. “Because I’ve been in this area for so long, I know most of the veterinarians, so I got a lot of referrals,” he said.

Lap of Love provides guidelines, Schultz said, “which are good for new or younger veterinarians,” but as an experienced veterinarian he has his own time-tested care protocols.

Schultz’s practice accepts two kinds of referrals, he said. The first is for dogs and cats that “have a terminal diagnosis of some sort, which could be cancer, heart disease, kidney failure – those types of things that aren’t going to be cured, most likely,” he said. These animals are generally older and their owners have decided not to pursue expensive surgeries, invasive tests or chemotherapy, he said. “That’s where hospice takes over and we just try to keep them as comfortable as we can, as long as their quality of life is good.”

Schultz usually receives a records transfer from the animal’s regular veterinarian, as well as any specialists. Schultz also examines the animal and talks with the owner, then provides his opinion on what steps should be taken to preserve the pet’s quality of life, and how to recognize when it is time to consider euthanasia.

“A lot of people wonder when is the right time to let go,” he said. “We go through all the things that make up quality of life, we go through questions and answers. As long as their quality of life is pretty good, we’ll keep going, but if it changes, we talk about peaceful euthanasia. How is their hydration, are they eating, are they able to keep themselves clean, how is their mobility, are they having more good days than bad days?”

More than 400 veterinary practitioners belong to the International Association of Animal Hospice and Palliative Care, said Jennings, although there are certainly more veterinarians providing mobile and hospice care. But membership “is on the rise, big time,” she said.

“If a pet had a chronic illness, years ago, veterinarians might suggest euthanasia, but today we have many more options,” she said. “Pet families are willing to do more for their pets, based on the fact that there is more availability in health care.”

Depending on the pet’s needs, Schultz may prescribe appropriate animal or human medication, as well as home-prepared food or prescription diets.

Anne Banas, of Clarence, has a unique perspective on end-of-life issues: She is a physician with Hospice Buffalo. “I’ve learned that knowing time is short can be a blessing,” she said. “Death is a natural part of life, and it doesn’t always have to be a medical emergency. When we know that time is short, we can focus on making the best of the time we have, and we can plan for a good death.”

In August, the Banas family was devastated by the death of feline Charlie, 16, who hid the symptoms of a lung tumor until it was a medical emergency. “It broke my heart that my 10-year-old daughter did not get the chance to say goodbye to her lifelong friend,” said Banas.

The family’s gray-and-brown-striped tiger cat, Daphne, is almost 15 and is living with either inflammatory bowel disease or lymphoma. “Pursuing diagnosis and treatment would not have changed her outcome in a way that justified the burden and distress,” said Banas.

“Dr. Steve is exactly what we needed,” said Banas. “He focuses solely on Daphne’s comfort and quality of life.”

When Daphne first became ill, the family had to drive her to the vet for injections of anti-nausea medication and steroids, Banas said. “Dr. Steve has been able to offer us options to treat her symptoms at home, avoiding the distress of car rides,” she said. “For now, she tolerates her medications well, and she seems to be quite happy.”

Banas said, “We don’t know how much time we have left with Daphne, but we take comfort in knowing that, with Dr. Steve’s help, we can keep her comfortable at home, and when it’s time, she can pass peacefully at home in our arms.”

Another part of hospice care is emotional support for the grieving pet owner, who, unlike those who lose a human companion, may be belittled for an emotional reaction. “This has been a disenfranchised grief in our society, at the end of a pet’s life and after the loss of a pet,” said Jennings. “Part of the concept of hospice is not only care for the patient, but also the concept of being able to offer compassion and support for the family and what they’re going through as well. And they want that.”

Robyn Eckhardt shares a moment with 17-year-old Gemma, who has seizures and is under the care of Dr. Steven Schultz through his Lap of Love practice.

Eckhardt said Schultz “was my dogs’ regular vet before he retired from his practice. I trust him implicitly.” When she heard that his new practice was offering hospice care, she said, “I was extremely relieved and happy … The thought of having to take Gemma, transport her to the vet’s office and have her last life experience be of stress, fear and in a cold, clinical environment is not something I want for her. I want her to be home, where she’s lived and been loved all her years.”

About a year ago, Schultz visited the Buffalo home of Laurie Reagan to euthanize 13-year-old Chloe, a Lab-cattle dog mix who was suffering from lymphoma. “She had always been very nervous and stressed-out at the vet,” said Reagan, “so I thought this would be a great alternative.”

Although Chloe had not been in hospice care, Reagan knew the end was near. “I had to carry her in the final few days, I had to hand-feed her, I couldn’t see her continuing through this process,” said Reagan. “I called my own vet to see if they offered a house-call visit, and they said no, but there was a service locally.”

The euthanasia visit was as peaceful as she had hoped, Reagan said. “It was amazing. He was very calm and quiet and I had set up a blanket, to make her comfortable.”

Although saying goodbye to a beloved animal is difficult, Reagan said she was comforted by the visit. “He was so sympathetic and kind, and understanding and empathetic about an owner going through this,” she said. “I would absolutely recommend this service, and I did, to a friend of mine in a similar situation. And I would do it again.”

The euthanasia is a gentle two-step process that begins when Schultz sedates the pet deeply. Afterward, he said, “a lot of people like to make their own arrangements, which could mean a lot of things, from burying them in their backyards to taking them to the SPCA, to taking them themselves to one of the pet crematories,” said Schultz. “If I take care of it for them, which does make it easier for the pet owner, I arrange for either a private cremation, which can be somewhat expensive, or a communal cremation, which can be less expensive. We use the same crematory services any veterinarian can offer.”

Complete Article HERE!

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That’s Funny!

[H]umor takes the sting away; it humanizes us; it helps us keep our perspective. Humor enriches us; it educates us; it brings us joy. Humor doesn’t dissolve the pain or make our life any less poignant, but it does help make things more bearable. That’s my philosophy, and I’m happy to share it with you. I hope that if you enjoy what you see, you will take the opportunity to share it with others.

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End-of-life discussions head off hardship in times of grief

By Terry Savage

[W]ith Mother’s Day coming up, and Father’s Day soon after, maybe it’s time to have a family discussion about what will happen when the unspeakable happens. Death isn’t pleasant to talk about, but if you’re willing to have that conversation, you’ll make things much easier at a tough time in the future.

No one likes to think about mortality. Young adults consider themselves immortal. Middle agers are fighting the concept of growing older. And the baby boomer generation figures it can bend the rules of aging as it has changed so much of our society in the past 60 years. But sooner or later, our time will come.

Will we leave a giant puzzle for our loved ones and heirs to figure out? Or will we smooth the way to making this transition a bit less painful, leaving them able — and legally empowered — to handle the assets we leave behind?

By the way, this is not a discussion just for aging parents. Families with young children need to organize their finances as well. Who will know the passwords to access everything from bank accounts and 401(k) plans to your valuable cache of airline miles?

Years ago, I created a Personal Financial Organizer form — which is still available free at my website, TerrySavage.com when you sign up for my free newsletter. It comes to you by a link in a return email, and you can print out as many copies as you want, giving them to friends and family to create their own roadmaps to their finances.

This four-page form is used both as a discussion starter and an organizational tool. Once filled out, it serves as a guide to locating your investment accounts, bank and brokerage accounts, will and estate planning documents, cemetery deed, safe deposit box and keys, passwords and credit card account numbers, and myriad other documents that would be hard to find in a crisis or after you’re gone.

But Harris Rosen, a retired executive, has taken it a step further in “My Family Record Book” ($15.95 on Amazon.com). The octogenarian has explained not only what you should organize, but why — and he explains the pitfalls and consequences of not knowing this important information.

Rosen speaks directly to seniors, giving resources and references on everything from how to order a tombstone to services that will take care of your pet after you are gone! There is an entire section on downsizing after the loss of a spouse and advice on how to dispose of furniture and clothing to charitable organizations that will make good use of these items. But mostly he focuses on organizing your financial papers to make life easier for your survivors.

Two other books of a similar genre are the best-selling “Getting it Together” by Melanie Cullen, published by Nolo Press ($14.31 on Amazon), which includes downloadable forms, and the spiral-bound “Peace of Mind Planner” by Peter Pauper Press ($12.04 on Amazon). Both make your planning organized and accessible to family members.

By now you get the idea. Any of these tools will make the perfect gift for the upcoming holidays and provide a starting point for important discussions of end-of-life matters, from locating health care directives and powers of attorney to planning a funeral or finding the policies and assets that will allow the survivors to deal with financial issues.

Yes, it’s a tough subject to tackle on Mother’s Day or Father’s day. But it’s not nearly as tough as it will be to try to figure it out in a crisis when your loved ones are not able or around to help you. And that’s The Savage Truth.

Complete Article HERE!

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A New Life for Dying:

Death Doulas and the Death Positive Movement

By Kristi Pahr

[O]ur great grandparents and their great grandparents and their great grandparents would have thought the way we die is strange. They died at home, we die in hospitals and nursing homes. They died surrounded by loved ones, we die surrounded by doctors and nurses. They died where they lived, we die where we die. Up until the mid-1800s, death was an everyday part of life. Members of multigenerational households, which were the norm, lived together and died together. Whether it came quickly or took its time, death happened in the home, just like birth. Just like life.

And when they died, their loved ones held space for them in their homes. Family and friends grieved them and remembered them and loved them through the transition and beyond. Today, though, death is scary. Death isn’t part of life anymore. We’ve removed it from the home and tucked it away in antiseptic, clinical, brightly lit spaces and it’s become foreign to us.

But, death doesn’t have to be frightening. Or solitary. Or clinical. Death can be peaceful and calm, serene and sacred. There is a movement of people taking death back. Pulling it from the cold, harsh confines of the hospital room, and bringing it back into the home and into the world of the living. Death doulas are on the forefront of the fight to reclaim grief and demystify death.

Death doulas, or spiritual midwives, serve a similar function to birth doulas or midwives, but on the other end of the spectrum. A birth doula helps the mother bring life into the world, a death doula helps when life is ready to depart the world. They provide support for the dying and the family, creating space, answering questions, asking questions and being a calm and loving presence during a time of great change.

Janie Rakow, president of INELDA, the International End of Life Doula Association, describes a death doula as, “… someone who acts as a guide and companion through the end phase of an illness. This work can start as soon as someone is admitted to hospice.” She says, “the doulas work with the dying person and their loved ones through the final dying process and into the early grieving stages afterward.”

Rakow explained that INELDA’s doula’s work generally runs in three stages. They begin by discussing death with the patient and the family, openly and honestly, allowing them to explore their feelings and their fears. The doula helps to establish what Rakow describes as “personalized, guided visualizations” and the dying’s preferences in music and readings are also defined. A vigil plan is also worked out during this time.

The second stage begins as the patient begins to actively die. The doulas hold space created during the establishment of the vigil plan and allow family to take breaks as needed, knowing that any changes will be relayed immediately. They don’t have to be afraid of not being present because the doula is trained to recognize the different stages and hallmarks of the dying process and can alert the family as things change. The doula is present during the death and stays with the family, providing comfort and support, until after the funeral home has come.

During the third stage, after the death, the doula helps the family to process their grief and answers any questions or concerns the family may be holding onto from the death.

While the term “death doula” is new, the concept of holding death and grief as sacred is not. Death becoming medicalized and moving into hospitals played a big part in it becoming something that families and loved ones feared. Grief over the loss of loved ones, the period of mourning after a death, were, until relatively recently, significant and special things. Now, however, we are encouraged to hide our grief, to consider it a messy and private thing, when, for generations past, it was a point of community. People were not expected to grieve alone when their loved ones died. They were lifted up within their communities and mourning was neither shameful nor private. They were given time and space to mourn.

Another group whose aim is to re-center grief and take back ownership of death is the death positive movement, begun by mortician Caitlin Doughty. She started The Order of the Good Death in response to the culture of fear that surrounds modern death. The group’s mission is to break down that fear and make death a part of life. According to The Order of the Good Death, the group is comprised of funerary professionals, academics and artists who strive “to bring death awareness and acceptance into a culture that is all too often death phobic.”

Both of these groups are working hard to bring death back into life and remove the stigma and fear modern society has pinned to the natural process. Both groups advocate for death as a sacred experience, a personal experience, a life experience.

By utilizing the services of a death doula, loss and grief can be refocused on the love and the sacred, instead of on fear and negative emotions. By joining, or just acknowledging, the death positive movement, people can help to de-stigmatize the process of dying, which in the end will make the idea of death much easier for everyone to digest.

Complete Article HERE!