10 things to read when you’re grieving

By Joshua Barajas 

[M]y father died nearly 10 years ago, and it was Joan Didion’s “The Year of Magical Thinking” that pulled me through.

At first, I wanted to hide in a foxhole, isolated with my own emotions as I processed the loss of my father. I withdrew from college and friends and would, on some occasions, drag a chair to the far corner of the backyard and cry.

Several books helped me navigate the process of grieving, but it was Didion’s memoir, which documented the year following her husband’s death, that offered the most solace. I’ve since read the book every year since my father’s death, long enough to memorize its passage about how “grief comes in waves.”

This week, the NewsHour asked its staff for recommendations of books or poems that helped them survive a period of loss. In their own words, here are 10 suggested reads for those who are grieving.

“Gathering the Bones Together,” by Gregory Orr

“The Caged Owl: New and Selected Poems”

This poem is the perfect distillation of the sense of loss, grief and darkness in the moment; best I’ve ever read. Written as he reflected on having accidentally killed his brother in a hunting accident when they were young boys.”

— Morgan Till, foreign affairs senior producer

“A Prayer for Owen Meany”

“A Prayer for Owen Meany,” by John Irving

“Within a year of my mother’s death I read Irving’s “A Prayer for Owen Meany.” I wasn’t consciously looking to cope with my grief, though Irving has long been a favorite of mine for the way his characters deal with sudden, random loss of one kind or another.

I unexpectedly came across a passage that so completely explained what I was feeling that I’ve since shared it with friends who’ve lost loved ones:”

“When someone you love dies, and you’re not expecting it, you don’t lose her all at once; you lose her in pieces over a long time—the way the mail stops coming, and her scent fades from the pillows and even from the clothes in her closet and drawers. Gradually, you accumulate the parts of her that are gone. Just when the day comes—when there’s a particular missing part that overwhelms you with the feeling that she’s gone, forever—there comes another day, and another specifically missing part.”

— John Yang, correspondent

“H is for Hawk,” by Helen Macdonald and “The Once and Future King,” by T.H. White

“H Is For Hawk” and “The Once And Future King”

After my stepfather died, I picked up naturalist Helen Macdonald’s book “H is for Hawk,” which is about how, after her father died, she dealt with it by learning to train a deadly bird of prey. Training a goshawk was a kind of escape for her, which was an impulse I understood. In “H is for Hawk” you also learn that T.H. White, who famously wrote the Arthurian novels, was a falconer. It was after this that I reread White’s book about King Arthur as a young boy, called “The Once and Future King.” I love this passage in there:

“The best thing for being sad,” replied Merlin, beginning to puff and blow, “is to learn something. That’s the only thing that never fails. You may grow old and trembling in your anatomies, you may lie awake at night listening to the disorder of your veins, you may miss your only love, you may see the world about you devastated by evil lunatics, or know your honour trampled in the sewers of baser minds. There is only one thing for it then — to learn. Learn why the world wags and what wags it. That is the only thing which the mind can never exhaust, never alienate, never be tortured by, never fear or distrust, and never dream of regretting. Learning is the only thing for you. Look what a lot of things there are to learn.”

–Elizabeth Flock, reporter and producer, arts

“When Breath Becomes Air,” by Paul Kalanithi

“When Breath Becomes Air”

“My sister died suddenly when I was six and she was 19. Over the last three decades, different books, songs and movies spoke to me as I learned to carry her loss. A book that I recently found helpful was ‘When Breath Becomes Air.’ The perspective that book conveys — a thirty-something man in the prime of his life preparing to succumb to terminal cancer — provides solace to the people he leaves behind. It’s a voice we don’t always have the luxury of hearing or the courage to listen to, but Kalanithi reminds readers to share life with loved ones until the final moment comes calling and to summon the strength to carry their memories forward.”

–Laura Santhanam, data producer

“In Blackwater Woods,” a poem by Mary Oliver

“New and Selected Poems, Vol. 1”

“For me this poem reminds me that in the grand scale of time, our short blip of existence is fleeting, but that doesn’t mean we should disengage from loving and caring for others and for the planet fully. Instead, it argues that we should engage completely and recognize that each moment we have is rare and amazing. While that makes saying goodbye harder, it’s because we spent the time we had the most fully. It’s a reminder to me to live in the moment and not fret about abstractions in the past or future — a reminder to love completely. And a reminder to me that earth will live on when humans disappear, and that there is different type of beauty in the long term growth and energy of a life-harboring planet.”

–Dave Berndtson, broadcast news assistant

The Harry Potter series

“Harry Potter and the Sorcerer’s Stone”

“When I’m grieving I turn to the Harry Potter series. They envelop me in the comfort of my childhood and allow a full escapism. I can escape with whichever one I’m in the mood for or read the entire series – yet again – if I really need to feel comforted. There’s something about turning to the books I read as a kid that help me push through grief, particularly these because they explore grief, death and love so much.”

–Alison Thoet, anchor assistant

Writing on your own

“I tried Joan Didion’s ‘Year of Magical Thinking.’ It didn’t work for me. The most cathartic was writing it down. It took two days after the cremation at a hut on the coast and then I let all 5000+ words out. I haven’t read it since. Maybe I will when I hit the 10-year mark. It sucks less with time, but different things suck now about it: grandfather’s absence, etc. It’s a crappy club to gain membership to earlier than your peers but admission to it was beyond my control.

–Hari Sreenivasan, correspondent

“Sea Fever,” by John Masefield

“Salt-Water Poems & Ballads”

This poem is a beauty that helped me with the loss of my father, who was in the OSS in WWII, and the CIA from its inception to 1973; he also always loved to sail. There is a pragmatism and joy in ‘Sea Fever’ that I feel embodies my father’s spirit. It was a way for me to share with the guests at his funeral and his memorial a piece of who my father was. I still have his sextant. He knew how to sail by the stars for navigation, and he believed in sailing four hour watches through the night, because that’s how it’s done. Sea Fever explains a hard life well lived, and how the call of the sea pulls the sailor back. I see myself as that last companion, the laughing merry rover, seeing my father off on his last voyage, to a rest he well deserved. I truly believe in celebrating the life and not mourning the death.”

–Bill Swift, Student Reporting Labs

“You Are A Badass: How To Stop Doubting Your Greatness and Start Living An Awesome Life,” by Jen Sincero

“You Are A Badass: How To Stop Doubting Your Greatness and Start Living An Awesome Life”

“My great grandma would send me inspirational quotes every other morning, and I depended on them to get through the day. She died in October, and after that I drifted to this book to feel that same stimulation of encouragement. I wanted to read something that didn’t make me sad — and would redirect my thinking. Self help is a genre I’m not too familiar with, but this book reads unusually raw and honest. And it forces you to confront how an unfulfilled life can lead to depression. This book gave me great advice.”

–Courtney Norris, producer

Complete Article HERE!

30 Resources to Help Caregivers

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Senior caregiving is time consuming, resource intensive, and something 34.2 million people in the United States are trying to balance with everything else going on in their lives. Being the primary caregiver for an aging loved one is hard work, and a lot of caregivers are struggling with the burden without knowing where to turn for help.

Luckily, you do have options. We’ve compiled a list of 30 resources for caregivers that can help ease your burden and provide helpful information on how to handle caregiving more effectively.

Organizations that Help Caregivers

Several organizations are devoted to providing resources, aid, and advocating for seniors and caregivers.

  1. Administration on Aging

The Administration on Aging is a government organization specifically devoted to providing programs and services to help aging seniors continue living independently. While the organization is primarily focused on the well being of seniors, it includes an Office of Supporter and Caregiver Services that helps provide funding to families for resources to help with caregiving.

  1. Family Caregiver Alliance

The Family Caregiver Alliance is a nonprofit organization that provides services and education programs, as well as doing advocacy work to help encourage government policy that’s helpful to caregivers.

  1. Caregiver Action Network

The Caregiver Action Network provides educational resources for caregivers and a forum to connect family caregivers with others dealing with similar issues.

  1. Rosalynn Carter Institute for Caregiving

The Rosalynn Carter Institute for Caregiving provides support programs and training resources for caregivers, as well as advocacy to encourage greater institutional help for caregivers.

  1. National Respite Network

Sometimes caregivers just need a break. The National Respite Network helps caregivers find respite services that temporarily take over some of the caregiving tasks so family caregivers can take a well-needed break.

6. Become A Caregiver

If you are looking to become a caregiver anywhere in the United States, look no further than caregivers.com.  They help get families and caregivers in touch quickly and easily and will ensure the family gets the best caregiver they can while matching the caregiver’s skill set to the right family.

Resources to Find Caregiving Support

A lot of caregivers find they need support in various forms, but don’t know where to start looking. These resources can help with some of the support you need.

  1. Benefits Checkup

Navigating the system of benefits available to seniors is tough, and many seniors leave potential aid or money on the table because they don’t know it’s out there for them. The Benefits Checkup site makes it easier to quickly see what benefits are available in your area that you or your loved one are likely to qualify for.

  1. Family Care Navigator

The support resources available to caregivers vary based on your geographic location. The Family Care Navigator helps you hone in on what programs and organizations are specifically available to you in your state.

  1. National Volunteer Caregiving Network

The National Volunteer Caregiving Network helps connect volunteers that want to help others in their communities with the seniors or people with disabilities that need that help. Volunteers help with things like transportation, errands, and home repairs.

  1. Lotsa Helping Hands

Lotsa Helping Hands is another website that helps connect volunteers with caregivers in their area that need some extra help. Caregivers can put the help they need on the website’s calendar and available volunteers step in to provide help with tasks like meal delivery or rides to appointments. 

  1. Eldercare Locator

The Eldercare Locator is a resource provided by the Administration on Aging to help seniors and caregivers find trusted professionals to help with the various services seniors commonly need, like home modifications and legal assistance.

  1. Well Spouse Association

Many senior caregivers are spouses taking care of their partner. The Well Spouse Association helps senior caregivers in this position tap into a larger community of other caregivers taking care of a spouse.

  1. Find Support Groups

Most communities have a number of support groups that caregivers can attend to find others struggling with similar challenges. Often, these support groups are specific to the particular issue your loved one is dealing with, such as cancer or Alzheimer’s support groups. These groups can be an invaluable resource for finding other people who understand what you’re going through and having a healthy outlet for your feelings.

Senior Care Options to Lighten the Load

Often what caregivers need most is somebody else to take on some of the work they’re trying to manage. These resources can help with that.

  1. Senior Day Care

Adult day care lets you drop off your senior loved one for the day while you work or run errands and trust that they’ll be in the care of trained staff. Senior day care also gives seniors a chance to socialize and stay busy in a new environment for the day, which many seniors start to need more as they age.

  1. In-home Care

In-home care professionals come to your home for a set number of hours to help out with the care your loved one needs. You can hire in-home care workers to provide basic around-the-house help, or home health care workers to provide health care to your loved one.

  1. Assisted Living

While many families hesitate to take the step of moving a senior loved one to assisted living, sometimes it really is the best choice for everyone. Assisted living facilities have staff available all hours of day to help with the ADLs seniors often need assistance with.

  1. Respite Care

If you don’t want to take a step that feels as permanent as assisted living, but you know you need a break, respite care can take the caregiving duties off your hands for a temporary period.

  1. Meals on Wheels

A big part of taking care of someone is making sure that they get enough meals each day to stay healthy. For overwhelmed caregivers, that’s not a small task. Meals on Wheels can help fill in with that part of your job in order to take one more thing off your plate.

  1. Independent Transportation Network

Once your loved one can no longer safely drive, getting them out to appointments and social events becomes another difficulty to manage. ITN helps seniors access affordable transportation options that provide the level of help seniors often need.

Educational Resources to Learn More About Caregiving Issues

People and organizations that can help are undeniably valuable, but sometimes getting the right knowledge at the right time is just as important.

  1. LongTermCare.gov

LongTermCare.gov is a government website full of educational resources to help people plan for long-term care and understand the options and benefits available to them.

  1. Guide to Veteran’s Long-Term Care

Veterans have even more potential benefits to tap into than most other seniors. If your loved one is a veteran or the spouse of one, this website can help you understand the benefits available to them.

  1. National Institute on Aging’s Alzheimer’s Caregiving Resources

A growing number of people provide care for Alzheimer’s patients, who require a distinct set of skills and knowledge to properly care for. The NIH provides educational materials to help caregivers learn what to do and expect.

  1. Alzheimer’s Association Caregiver Center 

The Alzheimer’s Association is one of the leading authorities on the disease. Their website provides a wealth of information on caring for Alzheimer’s patients based on up-to-date research on the subject.

  1. American Heart Association’s Resources for Caregivers

Heart disease is another common illness seniors face. The American Heart Association provides some educational tips for caregivers helping a loved one with heart disease.

  1. Cancer Caregivers Resources

The American Cancer Society likewise provides resources to loved ones of cancer patients to help provide the main information they need to take care of someone suffering from cancer.

  1. National Parkinson Foundation Caregiver’s Resources

The National Parkinson Foundation provides a number of resources to caregivers of seniors who have Parkinson’s. They also offer a helpline for caregivers that have questions.

  1. Caregiver’s Home Companion

The Caregiver’s Home Companion is a website that includes forums to connect caregivers to one another, and resources that cover many different aspects of caregiving, from the spiritual to the practical.

  1.  Next Step in Care

Next Step in Care provides guides for caregivers that help them figure out how to work with health care providers to figure out the next step for their loved one when facing complicated decisions and transition periods.

  1. AARP’s Caregiver Resources

In addition to the many resources they provide for seniors, AARP also provides planning guides and other educational resources for the caregivers that help care for seniors.

  1. Video Caregiving

For those that prefer to learn by video rather than reading, Video Caregiving provides a number of films to help caregivers learn the skills they need.

  1. mmLearn

mmLearn provides both videos and blog posts that cover an array of topics helpful to senior caregivers.

Senior caregiving is often difficult on a number of different levels, but any little bit of help you can get will make your caregiving work more sustainable and effective. Figure out which resources to help caregivers best fit your needs and take advantage of them. You’ll be a better caregiver if you’re less overwhelmed and getting the help you need.

Complete Article HERE!

When a Pet Dies, Helping Children Through the ‘Worst Day of Their Lives’

Reading age-appropriate books about a pet’s death, like this one for ages 4 to 8, may be helpful in getting a child over the grief.

[T]he loss of a pet is often a child’s first experience with death. Understanding the unique ways that children view pets and respond to their passing can help parents to ease the grieving process.

Joshua Russell, an assistant professor of environmental science at Canisius College in Buffalo, who has studied the effects of pet loss in children, explained that for many children, pets are more than just animals. “Many kids describe their pets as siblings or best friends with whom they have strong connections,” he said.

In a study of 12 children ages 6 to 13 who had lost a pet, published in the journal Environmental Education Research, Dr. Russell found that even years after the pet’s death, some children still described the loss as “the worst day of their lives.” He also discovered that children come up with unique ways to rationalize their pet’s passing and that the way a pet dies influences how children grieve.

“Children, in particular, have a distinct sense of existential fairness around whether or not an animal lived until an appropriate age,” Dr. Russell said.

Like adults, children more readily accepted their pet’s death when it was expected in some way. For example, children were less affected when they knew in advance that the animal would have a short life span. They seemed to know that a fish or hamster, for instance, would not live as long as a dog or cat. When an animal was sick, they generally agreed that euthanasia relieved the pet of its suffering. If an animal is terminally ill, parents can help prepare the child by talking about the impending loss, as well as the feelings of sadness it will evoke.

This book is written for children ages 8 to 13.

Yet when pets died in tragic and unexpected ways, the loss was harder for the child to accept. “When a pet dies suddenly, it highlights the unpredictability of the world. It tells children that the people and animals they love can die without warning,” said Abigail Marks, a clinical psychologist in San Francisco who specializes in childhood grief.

Of course, a child’s age and developmental level affect how he or she understands death, and a child’s grief looks very different from an adult’s. Children do not always cry or immediately show emotion. But this does not mean they are not deeply affected by the loss.

“Kids under the age of 5 will have a hard time understanding that the pet is gone forever because it’s difficult for them to grasp the concept of death,” said Jessica Harvey, a psychotherapist in San Francisco who specializes in pet grief.

One way young children may express their grief is through play. After the loss of a pet, they may pretend, for example, that a stuffed cat or dog became ill and passed away. Parents can help their children through the grieving process by actively participating in this type of imaginary play.

Reading age-appropriate books about pet death may also be helpful. “Goodbye, Brecken,” by David Lupton, for children ages 4 to 8; “Kate, the Ghost Dog: Coping With the Death of a Pet,” by Wayne L. Wilson, for ages 8 to 13; and “Memories of You,” by Erainna Winnett, for ages 7 to 12, are some examples.

School-age children will often have questions about the animal’s death, and the back-and-forth that ensues may open up larger conversations about love, loss and what happens after we die. When telling a school-age child about a pet’s death, Dr. Marks recommends being honest about what happened. Doing so lets a child know that it is not taboo to talk about death or painful feelings, which can set the stage to process other sorts of loss in the future. Parents should also validate any emotions that arise as the child mourns.

She said that a child’s grief would ebb and flow; they may cry one minute and then resume playing or talking about other things the next minute. Parents should be more concerned if a child has nightmares, increased anxiety or difficulty sleeping. If these symptoms persist, psychological counseling may help.

…and of course, our personal favorite.

Dr. Marks said it was also important for parents to follow their child’s lead. “If they are asking about the details of the pet’s death, it’s a sign that they want to talk about it,” she said. “They are looking for your comfort.”

For many children, it is also important to have a goodbye ritual. “Rituals around death are some of the most meaningful ways we have of recognizing someone’s life, but these ceremonies aren’t societally defined for pet death,” Dr. Marks said. Families can create their own rituals, like having a small memorial service, scattering the pet’s ashes, planting a remembrance tree or creating a photo album.

“This is a way to process the loss and to honor the role that the pet had in your family,” Dr. Marks said.

Complete Article HERE!

What will your last words be?

Legacy therapy helps dying patients tell their stories

Storytelling can help terminally ill patients find closure. Linda Johnson and Brandi Snider share stories at Hinds Hospice in Fresno​.

[M]aureen Cleveland inhaled deeply as she recalled the scent of the fresh tomatoes that her father brought home each summer from the cannery where he worked. The thin 60-year-old woman, who’s battling late-stage breast cancer, talked for an hour in her Carmichael home, smiling almost constantly as she described picnic days with her family of seven and other scenes from her Bay Area childhood.

Visiting hospice chaplain Connie Johnstone listened intently from the foot of the bed, egging Cleveland on with questions and scribbling down the occasional quote.

Johnstone, who works for Kaiser Permanente in Sacramento, has studied the art of conversing with the dying. She calls it life review; others in her field call it legacy therapy or dignity therapy. The point is coaxing out a patient’s most intimate memories and threading them into one last story, often to be recorded for family and friends. For aging baby boomers and others struggling with terminal illnesses, the therapy offers a new way to ease the pain of facing death.

“It’s a real important thing to have a witness to one’s life toward the end,” Johnstone said in her slow, Southwestern drawl. “It’s to have it confirmed to us. If we say it, and we get to look at it again, it gives it substance, space, importance.”

Dignity therapy has gained traction in recent years as hospitals, hospice organizations and palliative care centers look for drug-free ways to pacify patients. It involves multiple 30- to 60-minute question-and-answer sessions, usually conducted by a psychologist, social worker or trained chaplain.

Dr. Nathan Fairman, a UC Davis palliative care psychiatrist who has written about interventions for the dying, said life review stands out from other types of talk therapy because it produces a concrete document that helps the patient reflect and find closure.

“The therapist draws out the parts of their story that have to do with meaning and purpose and relationships so that they can leave the legacy they want,” he said. “You’re looking for the themes that will focus the patient’s attention on the sources of meaning in their life.”

Surrounded by books and photographs in her house, Cleveland spends her remaining days reading, taking in sun from the backyard, watching her young nieces play and telling stories to whoever will listen, she said.

“I’m pretty social, so anyone who walks in here gets stuck talking to me,” Cleveland said during a recent visit. “You need to share what you know, or it’ll disappear.”

Johnstone chooses her questions wisely, often revisiting themes from previous sessions. She remembers little details about her patients’ lives — where they were born, how many children they have, their mothers’ names and occupations. The small talk helps her segue into more difficult topics, such as estranged family members or traumatic experiences.

While it’s usually too late for righting wrongs or seizing missed opportunities, speaking to a stranger can help patients accept the past and feel a sense of calm near the end, Johnstone said.

“Everybody carries some kind of regrets,” she said. “You can’t put the genie back in the bottle. Once you’ve brought something out, it can’t keep recycling in the same way.”

Many patients feel isolated toward the end of life, and are reluctant to lean on loved ones for help, Fairman said. Between 15 and 20 percent of terminally ill patients are diagnosed with major depression, according to the American Psychological Association.

In a clinical trial of 100 terminally ill patients who received dignity therapy, 68 said they felt an increased sense of purpose after the treatment and 47 said it increased their will to live. Eighty-one patients said the intervention was helpful to their families.

“They feel if they share too much with loved ones it will burden them, so they withhold sharing things,” Fairman said. “In a situation like that, it can be really helpful to have someone who is trained in really good listening skills, who can tolerate the suffering people experience when they get close to the end of life.”

Cleveland, who does not have children, hasn’t worked out exactly how she wants to be remembered yet, but with Johnstone’s help she’s piecing it together. During a recent session she brought up a story she hadn’t told in years — one that took place at a school lunch table, some time in the late 1960s.

“There was this family in the neighborhood and they were poor, and they had nothing to eat but ketchup soup,” she said. “I couldn’t believe it. So I shared some of my lunch with them. It was how we were raised. If someone needed something, that was it. You didn’t say no.”

Many years later, Cleveland became a representative for a produce packing company, regularly visiting Central Valley orchards to take inventory and question the farmers about workers’ living conditions.

“They were living in the worst slums you’ve ever seen,” Cleveland said. “I always got in trouble for asking about that, but I kept asking anyway.”

Johnstone kept scribbling. Cleveland explained how her career was interrupted by a Hodgkin’s lymphoma diagnosis in her 20s, and how she spent years as a caregiver for a sick sister, mother and aunt.

During the next session, the pair will paint a cover for Cleveland’s written story. The title word, they’ve decided, is Survivor.”

“I’m seeing a connection here,” Johnstone said. “I think this is a source of a lot of your resilience.”

Technology has helped spread storytelling as a form of healing. StoryCorps, a nonprofit podcast network, launched its legacy initiative in 2010 to focus on people with serious illnesses. They visit hospitals and clinics throughout the U.S. to train providers on how to capture end-of-life conversations on cell phones. In California, the legacy project partners with Hinds Hospice in Fresno and the Zen Hospice Project at the University of California, San Francisco.

Perri Chinalai, director of community training for StoryCorps, said she believes storytelling helps build a bridge between patients and physicians that can ultimately improve care.

“This is an opportunity for people to talk about themselves outside of their diagnosis,” she said. “It allows for a more holistic understanding of who people are. … It could create a culture of storytelling that enhances the services.”

At Hinds Hospice, storytelling sessions are offered to all visitors, said community outreach liaison Jill McCarthy. Staff can conduct the interview sessions and use the StoryCorps app to archive stories in the Library of Congress’s American Folk Life Center.

Over the years, McCarthy and her staff have heard incredible stories, she said. She remembers an elderly pilot who described one of his first flights over Alaska, as well as an indigenous California man who wanted to record himself speaking in his native Mono language. But mostly, she works with families who just want to get to know a loved one better.

“If the person dies before they get to share their story, those stories go with them,” McCarthy said. “It’s a chance for families to talk about things they’ve never talked about before, to express what they mean to one another. They don’t have to be these grandiose things. It’s the little things that for generations have been handed down.”

Complete Article HERE!

Dying at home: What I learned from my husband’s death

Dr. Donald Low, centre, confers in the lab at the Ministry of Health and Long-Term Care about the results of the Legionella outbreak at Seven Oaks Home for the Aged in 2005.

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[T]he night my husband died, I slept beside his corpse in our bed. All night. This wasn’t exactly by choice: the funeral home did not retrieve bodies after 8 p.m., and there was no other bed available for me to sleep in, as all our children were home to help care for their father.

I tell this story whenever I discuss the realities of dying at home. Even as a physician assistant, I did not appreciate the challenges — or the immense rewards — of caring for my husband at home until his death.

According to a 2014 Harris/Decima survey, of those Canadians who express a preference for where they want to die, 75 per cent say they want to die at home, surrounded by loved ones. Interestingly, another Canadian study found that those loved ones aren’t quite as keen on the experience: half of the patients who said they wanted to die at home had family members who hoped the death would take place in an institution, like a palliative care unit. No matter: The majority (about 65 per cent) die in a hospital, which isn’t anybody’s first choice.

The palliative care and hospice community often use this data to advocate for more government funding of community supports, such as personal support workers, to help people die at home. And they’re right that home care and palliative care access is too uneven across Canada and in urgent need of more funding.

But what we don’t understand is how many of these hospitalizations at the end of life could be diverted with more nursing, more personal support workers, more respite for family caregivers. I believe that without better education around what’s involved in dying at home, extra resources won’t be enough.

Dying is messy. It shouldn’t have to be painful anymore, though in some cases, only deep sedation can relieve the worst pain. But pain aside, there is no getting around the progressive weakness, the loss of appetite, the fluctuating level of consciousness, the need for diapers or a catheter, and eventually, the shallow, laboured breathing. None of this has to be distressing for the patient, who can, if needed, be heavily drugged or even sedated. But it can be extremely distressing for family members to witness, and it can go on for days and, in some cases, weeks.

When I worked as a physician assistant in the emergency department, I saw many patients brought in by ambulance in those last stages of their disease. When I spoke to the family members, it was often clear they were overwhelmed by very predictable symptoms. But no one had laid it all out for them before. They weren’t looking for miracles — they accepted that death was inevitable — but they felt unprepared and untrained for the burden of watching their loved one struggle to breathe, to communicate, to just let go. Sometimes a spouse confessed that as the husband or wife’s death neared, they worried they’d always associate the home with the death. And so, they dialed 911.

How can we better support those family caregivers so that they don’t end up in the emergency department? Prepare them. Acknowledge the messiness of death. And obviously, provide palliative care resources.

In our house, I had a frank discussion with all the kids and even our cleaning lady: no matter how bad Don looked, no one was ever to call 911. I knew that if he was taken to hospital, he’d never come home again, and he’d die there. Our palliative care team had a binder that stayed on the kitchen counter, with Don’s Do Not Resuscitate order at the front. We had a nurse we could call if his symptoms weren’t being managed well. Don had opted for terminal sedation at the end: an induced coma, without food or fluids. The palliative care physician visited every few days to make sure the drugs were working, and to give us his best guess as to how much longer Don could go on like that.

I often see frail, elderly spouses who try to provide this care for their dying loved ones at home, and it wasn’t difficult to understand why they struggled. There’s no question that we were luckier than most families: I was relatively young, and we had the resources for me to stay at home and care for Don from the night they diagnosed his brain tumour until his death seven months later. Our children were incredibly strong and present, and we took turns doing even the most personal and intimate tasks for him.

Don had desperately wanted an assisted death, an option unavailable to him at the time. But if he had to die “naturally,” he told us, he’d prefer not to have strangers assisting him. In the end — only after Don was sedated, and with no small amount of guilt, we accepted help from those “strangers” to bathe him and turn him so he wouldn’t get bed sores.

There was so little comfort we could take in the fact of Don’s too-early terminal illness. But knowing that we helped him fulfil at least one of his wishes for his death — that he die at home — was comforting to us. And I thoroughly recommend it to other families if they can manage.

After Don died in my arms, all the kids came up to our bedroom and we surrounded him, breaking out his favourite scotch and sharing stories and memories. The palliative care doctor on call came to pronounce him dead and then I called the funeral home. And learned he’d be spending one more night beside me.

I’ll admit, it was weird. But as I pulled up the covers, I found they were mostly over on his side of the bed, and I smiled and looked over at his sweet face one last time. “Really Don? Hogging the covers, even in death?” And I slept soundly all night.

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Dying is happier than you think

[F]ear of death is a fundamental part of the human experience–we dread the possibility of pain and suffering and we worry that we’ll face the end alone. Although thinking about dying can cause considerable angst, new research suggests that the actual emotional experiences of the dying are both more positive and less negative than people expect.

The findings are published in Psychological Science, a journal of the Association for Psychological Science.

“When we imagine our emotions as we approach death, we think mostly of sadness and terror,” says psychological scientist Kurt Gray of the University of North Carolina at Chapel Hill. “But it turns out, dying is less sad and terrifying–and happier–than you think.”

The research, which examined the writings of terminally ill patients and inmates on death row, suggests that we focus disproportionately on the negative emotions caused by dying, without considering the broader context of everyday life.

“Humans are incredibly adaptive – both physically and emotionally–and we go about our daily lives whether we’re dying or not,” Gray explains. “In our imagination, dying is lonely and meaningless, but the final blog posts of terminally ill patients and the last words of death row inmates are filled with love, social connection, and meaning.”

The positive emotions that come with this kind of meaning-making were exquisitely displayed in a recent Modern Love column, written by beloved children’s author Amy Krouse Rosenthal. Rosenthal, who died of ovarian cancer 10 days after her column was published in The New York Times, wrote with profound love and humor about finding someone to marry her husband after she died.

“The column was so touching because it was so positive, so filled with love and hope,” says Gray. “While such positivity seems strange in someone so near death, our work shows that it is actually fairly typical.”

Gray, his graduate student Amelia Goranson, and their co-authors Ryan Ritter, Adam Waytz, and Michael Norton started thinking about the emotional experience of dying when they came across the last words of death-row inmates in Texas, collected by the state’s Department of Justice. They were surprised by how upbeat the statements were, and wondered whether our feelings about death and dying might be clouded by our tendency to zero in on negative experiences.

In their first study, Gray and colleagues analyzed the emotional content of blog posts from terminally ill patients who were dying of either cancer or amyotrophic lateral sclerosis (ALS). To be included in the study, the blogs had to have at least 10 posts over at least 3 months and the author had to have died in the course of writing the blog. For comparison, the researchers asked a group of online participants to imagine that they had been diagnosed with terminal cancer and to write a blog post, keeping in mind that they had only a few months to live.

Using a computer-based algorithm, trained research assistant coders, and online participant coders, the researchers analyzed the actual and imagined blog posts for words that described negative and positive emotions, such as “fear,” “terror,” “anxiety,” “happiness,” and “love.”

The results revealed that blog posts from individuals who were terminally ill included considerably more positive emotion words and fewer negative emotion words than did those written by participants who simply imagined they were dying.

Looking at the patients’ blog posts over time, the researchers also found that their use of positive emotion words actually increased as they neared death, while their use of negative emotion words did not. These patterns held even after Gray and colleagues took the overall word count and number of blog posts into account, suggesting that the increase in positive emotion words was not simply due to the effects of writing over time.

In a second study, the researchers conducted similar analyses comparing the last words of inmates on death row with the poetry of death-row inmates and the imagined last words of another group of online participants.

Again, they found that the words of those who were actually close to death were less negative and more positive in emotional tone than the words of those who were not close to death.

Both the terminally ill patients and the inmates facing execution seemed to focus on things that help us make meaning of life, including religion and family, suggesting that such things may help to quell anxiety about death as it approaches.

Gray and his co-authors acknowledge that the findings may not apply to all people who are approaching death – it’s unclear whether individuals facing a great deal of uncertainty or those who die of old age express similarly positive emotions near the end of life.

Ultimately, the findings suggest that our expectations may not match the reality of dying, which has important implications for how we treat people who are dying.

“Currently, the medical system is geared toward avoiding death–an avoidance that is often motivated by views of death as terrible and tragic,” the researchers write in their paper. “This focus is understandable given cultural narratives of death’s negativity, but our results suggest that death is more positive than people expect: Meeting the grim reaper may not be as grim as it seems.”

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Why You Need a Health Care Proxy and How to Choose One

Taking this important step can make all the difference in a health crisis

By Debbie Reslock

[H]ow would you finish this sentence? “The end-of-life care I would want is …”

Would you want all possible measures taken? To be in a hospital or at home? Surrounded by family and friends? Once you’ve decided, now imagine arriving at an emergency room unable to speak or tell anyone what you want. If you haven’t chosen someone to express your wishes — a health care proxy (also known as a health care agent or a power of attorney for health care) — they may never be known.

According to The Conversation Project, co-founded by Pulitzer Prize-winning writer Ellen Goodman in collaboration with the Institute for Healthcare Improvement, half of those 65 and older ending up at the hospital are unable to speak for themselves. The organization has created a starter kit to help us talk about the care we’d want as well as a guide on how to choose a health care proxy.

Why You Need a Proxy

Dr. Javette Orgain has experienced up close what happens when a medical crisis hits and there’s no proxy. Orgain practices medicine at VITAS Healthcare in Chicago and is an associate professor at the University of Illinois-Chicago, department of family medicine.

It’s best for patients and their physicians to understand under what conditions a person wants to be resuscitated, be intubated or receive comfort care only.

“I’ve seen families argue over who should make the decisions and what those decisions should be,” Orgain says, adding that some have even ended up in the courts.

Stepping in with her sisters to fill the proxy role for their mother and aunt, Orgain says that as a doctor many decisions were deferred to her. But when it came time to choose who would make her end-of-life care decisions if she was unable, Orgain chose a lifelong friend. She knew there wouldn’t be the emotional pull her family might have that would shift them away from carrying out her wishes.

Choose the Right Person as a Health Care Proxy

It’s vital to find the person you can trust. Orgain says she’s witnessed what happens when a health care proxy doesn’t honor what was wanted.

“It’s the most harrowing of experiences when the proxy isn’t chosen well,” says Orgain. “In fact, choosing the right proxy is as important as having a proxy.”

When families haven’t had the conversation, they’re often left at the bedside of their ill loved one with many factors pushing on them, says Dr. Jessica Zitter, who practices critical and palliative care at Highland Hospital in Oakland, Calif., and authored the book Extreme Measures: Finding a Better Path to the End of Life.

“There can often be a push to keep people alive on a machine. If the family doesn’t know what would be wanted, we try to support them as substitute or surrogate decision makers, but it’s very stressful and painful for them,” Zitter says.

How to Choose the Best Health Care Proxy

When choosing someone to be your voice, here are a few questions The Conversation Project recommends considering:

  1. Will they be able to make decisions for you, even if their own wishes are different from yours?
  2. Will their emotional connection to you get in the way of making decisions on your behalf?
  3. Will they stand up for you?
  4. Will they be comfortable asking questions of busy doctors and other providers?
  5. Will they ask for clarification if the answer or situation isn’t understood?
  6. Will they be able to make decisions in changing situations?

From Doctor to Patient

Dr. Janet Sollod in San Francisco has seen what can happen in a medical situation from both the physician and patient side. Diagnosed with cancer 10 years ago and now no longer practicing, she found herself able to navigate confusing waters only because of her medical knowledge.

When it came time to name her own health care proxy, she knew what was important.

“I wanted someone who could ask questions and not just say ‘Yes, doctor,’” Sollod says, “or if I’m unconscious, to ask the doctors why they’re doing this test and not that one.” She wanted a proxy with a medical background. But even though her father is a physician, she knew it would be too hard for him. “It’s just too close to home,” she says.

So along with her mother, Sollod chose two close friends: one as an advocate and the other with strong medical knowledge who will ask the right questions. What she wants is for the three of them to make the best decisions together.

(The Conversation Project cautions, however, that it is generally not advisable to name more than one person to be a proxy, because if they disagree on a difficult decision, things could get complicated. You should, however, always name an alternate proxy in case your first choice becomes unavailable.)

Sollod cautions that the proxy doesn’t have to be a family member. “It might be a close friend who knows what you want,” she says. “And don’t feel bad about offending anyone. This is your life and it’s your decision.”

Put It on Paper

Having the conversations is the first step. But you’re not finished with the task of appointing a health care proxy until you put it in writing.

You will make the designation by filling out the health care proxy document. In an advance directive, you outline your wishes for health care should you be unable to speak for yourself.

You may be able to do this with one form, which you can complete without an attorney. You may need witnesses, however. Find your state’s advance directive by going to the National Hospice and Palliative Care Organization’s CaringInfo.

Looking Ahead

Unfortunately, even when people have the conversation, they can still end up on what Zitter calls the end-of-life conveyor belt. Featured in the documentary, Extremis, Zitter is shown talking to a woman with the same genetic disease her father and sister died from. The woman told her brother she wanted to die at home and yet she still ended up in the intensive care unit on a breathing machine.

It’s best for patients and their physicians to understand under what conditions a person wants to be resuscitated, be intubated or receive comfort care only. But we need to get the message out, too, that more treatment is not necessarily better, Zitter says.

There’s also the phenomenon of what she calls “the sister who flew in from the coast.” Leaving your loved one to make the decision when that person is so fragile and emotional usually means that if anyone questions it, they’ll most likely shift to prolonging life, even if that requires using machines that the person didn’t want. In fact, Zitter says, the default family and medical decision is usually to keep the heart beating.

Boomers Leading the Way

We’re making progress in talking more openly about our end-of-life decisions. Goodman is optimistic that boomers will continue to play a part.

“They changed the way we looked at birth and they’ll change the way we look at death and how we die,” she says.

We need to sit at the kitchen table and have these conversations, Goodman says, and then we need to bring it into the medical institutions. Notes Goodman: “It wasn’t a doctor who changed the way we viewed births, it was us. We said this isn’t just a medical experience, it’s a human experience. Dying needs to be seen that way too.”

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