‘The Bitter Comes With The Sweet’

— Without Death, There Is No Life


In the early days of the pandemic, my days were bookended by stories of death. I woke up each day hours before dawn to work on my book manuscript, happy to have a passion project to soothe my anxious energy. My book chronicles how Vermont patients, caregivers and health care providers navigated medical aid-in-dying, in the aftermath of legalization. In the morning, I combed through my notes, writing feverishly about dying, and in the evening, I absorbed the news of bodies accumulating around the world more quickly than they could be buried.

I have never been more acutely aware of my own mortality. I offered my husband detailed instructions about how to tend to my unfinished manuscript, should the need arise. We joked, with gallows humor, about how my death would make an ironic capstone to the book; he, of course, agreed to pen the afterword for the posthumous publication.

Studying medical aid-in-dying, and now living through the greatest pandemic in 100 years, has forced me to reckon with mortality. Over the five years that I’ve collected stories about death and dying, people have often questioned how I could study such a morbid topic. Isn’t it depressing? The answer is, anything but. Humbling and grounding, yes, and at times terribly sad, but never depressing.

An avid reader since childhood, I have always taken great comfort in stories. When the pandemic began, I realized that immersing myself in stories about death had actually helped me. Thinking about my own inevitable death is sad, but it doesn’t terrify me anymore. At 40, I hope I have a great many years left, but I’m also more or less at peace with my finitude.

Yet last spring, when I picked up Natalie Babbitt’s novel “Tuck Everlasting” to read to my 7-year-old son, I realized it was this book that first made me address my mortality, some 30 years ago.

If the concept of mortality was terrifying to me, the idea of immortality was even more so.

Published in 1975, “Tuck Everlasting” takes place in the 19th century, 87 years after the Tuck family unwittingly drinks from a magical spring that renders them immortal. The story is set in motion when a 10-year-old girl, Winnie Foster, accidentally discovers their secret. They bring her to their woodland cottage to persuade her to keep quiet, warning her of the catastrophe that would ensue if news of the spring were to become public.

The novel quickly charmed educators and parents, winning numerous literary awards. While it captivates young readers with its lyrical prose, its matter-of-fact philosophizing on life and death set it apart. In a key scene, Angus, the patriarch of the Tuck family, explains to Winnie that dying is an unavoidable part of the “wheel of life.” The bitter comes with the sweet. It is the difference between having a life and merely being alive. You can’t have living without dying.

The Tucks haunted my childhood. To my 10-year-old self, it seemed clear that the only thing scarier than dying was not dying. How awful it would be to outlive nearly everyone that you love! How bleak it would feel to be resigned to a life of complete social isolation. If the concept of mortality was terrifying to me, the idea of immortality was even more so.

This is precisely what the author had in mind. Babbitt wrote the book to tame the worries of her daughter Lucy, who was then 4-years-old. Babbitt wanted to help Lucy understand that dying was a natural part of the wheel of life, that not dying is much less desirable than it may seem.

Flipping cultural scripts on fears about death: this is the power of stories.

As a non-fiction author, I write for reasons not so different from Babbitt’s. I use real people’s stories to examine cultural fears about death — in my case, about lack of control over dying. Medical aid-in-dying offers what is, for many, a seductive vision of personal control over dying, and the promise of a peaceful, sanitized death. Yet such control often proves illusory, both because access to assisted death is much more complicated than it may seem, and because death, itself, is wily.

People have often questioned how I could study such a morbid topic. Isn’t it depressing? The answer is, anything but.

I think about a woman in her mid-60s I’ll call Candace, who developed metastatic cancer. Once it was clear that she was not going to get better, Candace decided to die on her own terms, with medical assistance. She procured the lethal prescription, which was no easy feat, because many physicians are reluctant to participate in the process. By the time she was ready to die, however, she was no longer able to ingest the medication.

The pandemic has made me even more sure that, like Candace, we are not in control of our destinies. But the Tucks weren’t in control, either. They waited passively, resigned to let the oppressive unfurling of time wash over them. In this sense, immortality’s promise of control over death is also illusory. It is poignant that the Tucks look forward to the day, every 10 years, when their sons return to the family cottage. During the pandemic’s eternal spring, when days bled into weeks and then months, I identified with this feeling, marking my days with UPS deliveries, as time moved ever so slowly.

During the pandemic, I have been in the fortunate position of being able to forestall illness and death with the appropriate precautions, such as staying at home. These measures should permit me to avoid the wrong sort of death. (There is universal agreement at this point that dying from COVID-19 is the wrong sort of death.) But I cannot avoid death altogether, nor (I think) would I want to

Now, 10 months into this crisis, my book is complete. The wheel spins on. The end of the pandemic no longer feels as far off and impossible as it did last spring. And still, I wonder what kind of story I am in. I marvel at that wonder.

Complete Article HERE!

Is End of Life Its Own Stage of Life?

A sociologist makes the case for embracing this period as a distinct life stage

By Lola Butcher

Deborah Carr, professor and chair of the sociology department at Boston University, has spent much of her career studying death and dying. That expertise led, in 2019, to an invitation to write an article in the Annual Review of Sociology about well-being at the end of life.

“When I started writing what I knew about things like pain and suffering at the end of life, it dawned on me that we need to interrogate: What is end of life?” Carr said. “We don’t actually have a clear definition.”

At the Gerontological Society of America’s annual scientific meeting last year, Carr proposed that “dying” or “end of life” should be considered a new life course stage. In an interview with Next Avenue, she discussed the merits of the idea.

Q: Why do you consider end of life its own life course stage?

Deborah Carr: The end-of-life period is longer than it ever was historically. A hundred years ago, people would die suddenly or shortly after becoming sick. Unfortunately, we are actually seeing an uptick of that short duration with COVID-19. But for most other leading causes of death among older adults — cancer, heart disease, chronic obstructive pulmonary disorder — there can be a very long time period between becoming sick and dying.

If we think about the end-of-life stage as something that we can have some agency over … it may demystify it.

As I started thinking about this expanded period, I realized that end of life is like any other life course stage. There are developmental tasks — things we should do — during this stage to ensure smooth transitions.

Just as we learn, as children, how to be a teenager and then how to be an adult, maybe we need to learn how to prepare for the end-of-life stage.

What are the other life course stages?

The main stages are infancy, childhood, adolescence, young adulthood, midlife and old age. Even though these stages make sense to us now, some of them are actually pretty new.

For example, the notion of adolescence didn’t even exist until the very early twentieth century because many would go from being children to adults before high school and college were widely attended, and when child labor was common.

Likewise, midlife, or middle age, is a pretty modern construction.

How does the end-of-life stage differ from old age?

I think it’s important that, culturally, we move away from the notion that old age equals death, because that is ageist.

Obviously, old age is among the most powerful risk factors for death, but about twenty-five percent of all people who die each year are under age sixty-five.

And many older adults are perfectly healthy; they aren’t in the end-of-life stage unless something happens like they get COVID and die a week later, for instance.

When does the end-of-life stage begin?

Some life-course stages have biological or legal markers. For example, adolescence generally correlates to puberty; in most states, people are legally considered adults at age eighteen; old age is typically thought to start at sixty-five when most people become eligible for Medicare and Social Security.

End of life is different in that the starting point is unclear. We can’t definitely state when the end-of-life stage starts, because illness trajectories are uncertain.

The important thing is that, once they start developing major chronic illnesses, people — whether they expect to continue living for one year or four years or ten years — should think about how they want to live during that stage of life. I’d encourage them to discuss the topic with family members, embrace it and take the steps that one needs to do in order to have that stage of life be as pain-free and peaceful as possible.

People could critique this idea on the grounds of ‘Well, how do you prove someone is in the end-of-life stage?’ I’m not out to prove anything, but just really to reshape our thinking of how we can prepare for, rather than avoid thinking about, the inevitable.

You mentioned ‘developmental tasks’ that need to occur at the end of life. What’s on the to-do list at this stage?

Just as you tell kids to eat their vegetables so they will be healthy as an adult, there are things that we can encourage people to do to prepare for the end of life.

Talk about what kind of funeral rites — if any — match your personal preferences. Talk to your loved ones about how they will survive financially without you. Encourage couples to have conversations about how the surviving spouse will manage finances and household tasks.

All of these preparations are things that I hope people are doing already. But often they don’t, because we as a society fear death. If we think about the end-of-life stage as something that we can have some agency over, something we can control to the best of our capacities, it may demystify it and really destigmatize it a bit.

You’re talking about something much bigger than filling out an advance care planning document, right?

Advance care planning is something that one should do early in life to help facilitate the transition to end of life. Have those conversations early and often because your preferences are likely to change over time.

Oftentimes, people do advance care planning too little, too late. For instance, when someone is given an opportunity to do a living will after they arrive at the hospital and is already dying or in severe discomfort, that’s not the optimal moment to do planning because the patient and family may be in distress.

So, we can think about advance care planning as something that we do earlier in life that helps to have a more satisfactory end-of-life period that accords with one’s wishes. It also can make the end-of-life period easier for loved ones. 

It’s really hard emotionally to make a decision for someone else’s end-of-life care. It helps when people who are in that stage of life have already brought their family members on board and talked about what their preferences, values and fears are.

Not to trivialize, but in some ways it’s like those old anti-drug ads: “Just talk to your kids about drugs.’ Just talk to your loved ones about end of life because it will help you all prepare.

Complete Article HERE!

A Valentine’s Day Song for End-of-Life Care

End-of-life care planning has taken on added urgency as COVID-19 cases and deaths have surged

By Andrea Sears, Public News Service – NY

If you’re looking for a unique gift for Valentine’s Day, you might consider giving some peace of mind — by deciding and sharing what type care you’d want in a health crisis.

The COVID pandemic has brought new urgency to the need for end-of-life planning. It may seem like an unlikely theme for a song, but the not-for-profit organization Compassion & Choices has put its advice to music to encourage people to prepare advance directives for end-of-life care.

Kim Callinan, the group’s president and chief executive, said she hopes the song will help people find new ways to share messages of empowerment, gratitude and the importance of making plans aligned with their personal values and priorities.

“Valentine’s Day is a time when you show your loved ones that you care about them,” she said, “and one way to show that you care is to give the gift of clarity by documenting and discussing your end-of-life preferences.”

The song, “This Is Your Show,” features Broadway and film star Carmen Ruby Floyd. Callinan said the second verse captures the core message with the words, “You have the option to write your last chapter.”

Brandi Alexander, national director of community engagement at Compassion & Choices, noted that surveys show African-Americans are more likely to choose aggressive treatment to prolong life, but this group also is less likely than others to prepare advance directives, to let people know their wishes for end-of-life care.

“A lot of it has to do with a history of mistrust with the medical community, and really just not wanting to have the discussion,” she said, “and therefore, we don’t talk about it until it’s almost too late or until we’re in a time of crisis.”

Alexander added that when her father died without making his own end-of-life wishes clear, it caused disagreement and tension in her family as they tried to decide what he would have wanted.

Callinan urged people to go through the process of deciding what level of care they want, and then communicating those wishes. The organization’s website has a plan-your-care section that is free to use.

“That has a simple checklist that helps them to learn what priorities are most important to them and how to fill out an advance directive, how to make sure your doctor’s aware of what you want; having conversations with your health care proxy and your loved one,” she said.

She pointed out that end-of-life planning and discussions are about love, and how you or your family want to be cared for.

Complete Article HERE!

When dying is a feminist issue

— Report reveals why terminal illness, their own or loved ones, hits women hardest


Dignity In Dying Scotland will publish Dying In Scotland: A Feminist Issue tomorrow, outlining that current laws on assisted suicide are failing the female population.

At present, UK law does not allow people to choose their right to die. Those who wish to end their life are forced to travel to clinics such as Dignitas in Switzerland, where assisted dying is legal.

But research by the campaign group, which has long sought a change in the law to give terminally ill people the right to end their own lives, suggests the impact of current legislation on women is huge – and that the status quo should be challenged.

Dignity In Dying’s research involved speaking to women who had either been given a terminal diagnosis or who were caring for or had cared for a terminally ill loved one. And their tales of experience, worrying about how their lives will end or watching people they love suffer, highlights the need for change.

The group says 80% of women are in favour of changing current legislation.

Recent figures show that more than half of Scotland’s 759,000 adult carers are female.

Many have had to nurse relatives with terminal illnesses towards the end of their lives and spoke about the pain and suffering they witnessed, and how they wished there was something they could have done to end the suffering, or ensure a peaceful, dignified death.

The report also highlights that 82% of NHS nurses are female, meaning more women are exposed to the effects of lack of end-of-life choice.

And in Scotland, with women being paid on average 15% less per hour than men, access to a clinic such as Dignitas, which costs £10,000, is less viable for females.

The report says just 6% of the female population think the UK’s ban on assisted dying is working well – and that women need to be listened to, to bring Scotland into line with progressive countries around the world.

Ally Thomson, Dignity In Dying Scotland director, said: “Women have made their point clear – the law in Scotland is not working for them. They witness needless suffering at the end of life and are anxious about their own deaths given the lack of choice available to them in Scotland.

“They also overwhelmingly support a change in the law on assisted dying for terminally ill adults. We need to listen to women when they tell us that the current options available to people facing a bad death are not in any way suitable alternatives to safe and compassionate laws that allow people a dignified death.

“We know the lack of choice is forcing dying people to contemplate unimaginable, traumatic ways to end their life. At Dignity In Dying we have heard horrific stories about what dying people have had to resort to in order to end their pain and the impact this has on their loved ones.

“Our MSPs must see the ban on assisted dying does not work; it merely drives the practice overseas and underground with disastrous consequences for Scots families. There will be a new bill in the next session of the Scottish Parliament to introduce safe and compassionate assisted dying for terminally ill Scots.

“Assisted dying will be an issue in this year’s Holyrood election and we urge all candidates to listen and pledge their support to end needless suffering and give women the peace of mind they so desperately need.”

Norma Rivers, from Ayr, is terminally ill with myeloma and, while chemo is keeping her alive, she knows it’s only a matter of time before her health will decline.

Having lost her mum, dad, gran and brother to cancer, Norma hates to think of leaving her husband, daughter and grandchildren with bad memories of her death.

“I have seen it first hand. It was horrific,” said Norma, 68. “I wouldn’t wish it on anyone. I am not willing to let my family go through that. I can’t. There’s no debate there.”

Norma was diagnosed with blood cancer in 2016 when she fainted after giving blood.

“It came completely out of the blue,” she said. “I had been seeing the doctor because I felt exhausted all the time but because of my age, they kept checking for thyroid problems.”

The gran of three was eventually sent to hospital for further tests, and the next day she got a call from her GP to say she had blood cancer.

“The prognosis was five years,” said Norma. “They said it was terminal.”

The former airport VIP lounge host endured targeted chemotherapy, followed by a stem cell transplant in 2017. For 18 months she was free of cancer but in November 2019 the myeloma returned.

“Now I’m back on chemo and, while it is keeping my cancer at bay, my body isn’t tolerating it,” said Norma. “I’m scared now that I’m running out of options. When the time comes, if I could, I would go to Dignitas for help but if the only other option is to do it myself then I will. This is the only viable option for me.

“I come from a family that has experienced cancer and the end has been awful for most.

“None of them had a good death, but my dad’s was the worst. And that’s the image of him that sticks in my mind. If only he had the option to go peacefully. I can’t put my family through that.

“I fully support the Dignity in Dying campaign to have assisted dying made legal here.

“When someone is dying and they want to die with dignity, that is their choice. There should be no question about it.”

Dignity In Dying’s campaign has the backing of former Scottish Labour leader Kezia Dugdale.

She said: “Most will be familiar with the maxim that ‘The personal is political’. Often this is spoken about with regards to how we live, but rarely with regards to how we die. This report focuses on the voices of women, telling us how the current laws around dying affect them and why those laws need to change.

“We now know women’s experiences are too often dismissed and their wishes overlooked. We must examine how gender affects all elements of health – and this includes end-of-life care and choices.

“Change comes when the voices of people who live under the injustice of a bad law come together to expose its cruelty. This is the lesson we learn when we look back on the past – on women’s suffrage and civil rights, as well as recent reforms on equal marriage and reproductive rights.

“In Scotland, we have a system where healthcare professionals and parliamentarians hold the power over how women die. We accept as a society that some end-of-life practices are opaque – but this ultimately disempowers dying people and their families, and we must be bold in challenging the status quo.

“It takes movements of people to shift the power balance back to dying people and their loved ones. But the movement for the right to die with dignity is strong – rooted in compassion and empowerment, and I believe assisted dying will be Scotland’s next progressive reform. Scottish women want change, and Scottish parliamentarians have the responsibility to take action.

“I’d never thought about dying as a feminist issue, but after reading this report it’s clear to me that the law in Scotland is failing women.”

Complete Article HERE!

‘Where is our humanity?’

— A Minnesota man is on a mission to keep Native burial customs alive during the pandemic

Tribes beset by loss have few morticians in tune with traditions 


Braving bitter cold and gusting winds, nearly a dozen people said prayers in their native Dakota language as they watched a bonfire blaze through a deceased man’s clothing, sending a thin trail of smoke drifting over the snow-covered hills on the Lake Traverse Indian Reservation in South Dakota.

The traditional burning of garments represented a final rite of passage for the spirit of Francis Jay Country Jr., a 66-year-old tribal elder and musician whose life was cut short this month by the coronavirus. The bonfire also culminated two days of elaborate ceremonies in which a tribal chief, dressed in an eagle feather headdress, led family members in songs, drumming and prayers facing the four directions.

For Mary White-Country, now a widow, the rituals brought much-needed comfort that her husband’s spirit was no longer suffering and had begun its journey. “Today, I have cried all my tears,” she said after the ceremony. “There is closure because my husband was sent off in a respectful manner, in a way that honored his traditions.”

But the burial customs and ceremonies that many Indigenous communities have cherished for generations are under pressure from an unforeseen enemy — COVID-19.

The coronavirus is killing American Indians at staggeringly high rates, inflicting incalculable trauma and exposing historic gaps in the predominantly white-owned funeral services industry. Only a handful of morticians in the region have specialized training in the diverse Indigenous customs that follow a tribal member’s death and know how to navigate the complex process for arranging burials on reservations. Overwhelmed by an upsurge of bodies, these funeral directors are being forced to turn away many Native families, depriving them of a traditional ceremony and emotional closure.

Nationwide, American Indians are perishing from COVID-19 at nearly twice the rate of white people, but the disparities are even greater across the Upper Midwest. Over 10 months of the pandemic, Native Americans in Minnesota have died at four times the rate of white Minnesotans, and they are being hospitalized at nearly 3.5 times the rate of whites after adjusting for age, according to state Department of Health data.

Few have borne closer witness to this deadly toll in Indian Country than Robert Gill of Buffalo, Minn., a citizen of the Sisseton-Wahpeton Oyate tribe and among the only Native American morticians in the country.

A gentle hero to many tribal members, Gill has made it his life’s mission to restore Native burial customs and to “decolonize,” as he calls it, the process of honoring and burying those who die on Indian reservations. Since the arrival of the coronavirus, death has become an all-encompassing specter of Gill’s daily life, consuming his days and even his nights. He travels hundreds of miles each week to remote tribal communities as far west as the Crow Indian Reservation in Montana and as far north as the Turtle Mountain Indian Reservation near the Canadian border.

Before the pandemic, Gill was being asked to arrange three to four burial ceremonies a month for Native families. Now the 50-year-old mortician is receiving that many funeral requests every week.

Even with a punishing work schedule, he sometimes struggles with guilt over his inability to meet the surging demand for traditional burial services. He knows that many tribal families are being left with no choice but to turn to white-owned funeral homes with morticians who do not understand their language and customs. Without ceremonies rooted in their culture, Gill argues, tribal members are disconnected from their history and unable to mourn properly.

“Where is our humanity?” Gill asked, as he prepared to load a casket into his waiting hearse. “An expression of a life that was lived brings closure for a family. And if they can’t have that, then it’s not dignified.”

“Where is our humanity?” Before the pandemic, Gill arranged three to four burials a month for Native families. Now he is receiving that many funeral requests every week.

A dark legacy

The dearth of funeral options, some tribal leaders argue, is a legacy of America’s dark history of racial subjugation of American Indians and their religious practices. Until 1978, when Congress passed the American Indian Religious Freedom Act, spiritual ceremonies like the sweat lodge and drum dances were still technically illegal. The prohibitions enabled Christian churches to establish deep footholds on reservations and further restrict Indigenous customs — including their ceremonies for honoring the deceased.

“As a kid, they called us ‘devil worshipers,’ and we were taught to be ashamed of our own culture and traditions,” said Chief Arvol Looking Horse, a keeper of the Sacred White Buffalo Calf Pipe and elder of the Cheyenne River Sioux Tribe. “Even our funeral ceremonies were outlawed.”

For Gill, the doors to becoming a professional seemed all but sealed as a child growing up along the wooded shores of Buffalo Lake on the Lake Traverse reservation. Gill suspects that, were it not for his unrelenting mother, he never would have graduated from the reservation’s public high school in Sisseton, S.D., which still calls its sports teams “the Redmen.”

When he was in second grade, Gill’s mother became alarmed when her son kept coming home from school with headaches. Gill, then just 9, told her that white teachers were beating him with rulers and regularly pulling on his ears and hair. His mother, Patricia Gill-Eagle, then learned of another boy who was beaten so badly with a broomstick that welts formed on his back. Fed up, Gill’s mother and 10 other parents removed their children from the local elementary school in Sisseton and opened their own tribal school.

“The public school made my son feel little, like he couldn’t make it in the world,” said Gill-Eagle, a retired nurse who is still active in the tribal school system. “He didn’t learn to be a proud Native until we pulled him out

After attending a nursing program, Gill spent nine years working as an ambulance driver and emergency medical technician (EMT) on the Standing Rock and Cheyenne River reservations in the Dakotas, where he says the poor treatment of deceased Natives became impossible to ignore. It sometimes took hours for a mortician to arrive and remove a body after someone died; and the bodies could be decomposed beyond recognition, he said. The non-Native morticians who arrived at the death scenes would sometimes talk or joke about a recently deceased person as if grieving relatives were “invisible or not in the room,” Gill recalled.

“I witnessed a deep lack of respect,” Gill said. “It opened my eyes and made me realize that we have customs and traditions that allow us to care for the deceased, but we weren’t being allowed to practice them.”

Determined to bring more dignity to the burial process, he enrolled in the Worsham College of Mortuary Science in Chicago, where he graduated in 2012. He is believed to be the only licensed mortician of Dakota heritage in the country.

Long-distance house calls

Today Gill is virtually alone in the funeral business for his willingness to make long-distance house visits — sometimes driving entire days, through sleet and snow, to meet with tribal families in their homes. Each visit carries the risk that he will contract the virus still raging through Indian Country. Gill is the only one of five morticians who work at Chilson Funeral Chapel in central Minnesota who has not been sickened by COVID-19.

“You’ve got to have nerves of steel to do this work in a pandemic,” Gill said.

Beyond the ceremonies, he spends long hours in the embalming room preparing bodies for public viewing. Too often, Gill said, he heard tribal members complain of how their loved ones “looked like clowns” after non-Native morticians failed to recognize their darker skin hues and used bright-colored makeup (purples and reds) meant for white skin, he said. Gill carries a cosmetics kit on the road and often touches up a body before a ceremony.

“Sometimes I ask myself, ‘Why do my people not have their own funeral homes?” he said. “We buried our own for hundreds of years.”

On a frigid day in mid-January, Gill traveled 200 miles through an unforgiving blizzard to a hamlet on the far reaches of the Lake Traverse Reservation to meet with relatives of Ronald Allen Goodsell, a 69-year-old former construction worker who died just days earlier from COVID-19. The evening light was still pouring through the windows of the family’s kitchen when Gill and his broad, 6-foot-3-inch frame appeared in the doorway with a suitcase full of documents.

He was greeted by three generations of Goodsell family members — including siblings, cousins and grandchildren — who came and went through the crowded kitchen as Gill talked them through the traditional burial process. The family had decided to give Goodsell an Indian name, “Tatanka Ob Mani” (Walks with Buffalo), which involved a separate naming ceremony. Then came a long discussion over the limited choice of caskets. Goodsell’s widow wanted a coffin decorated in the Native colors of the four directions (black, red, yellow and white). But such a casket, the family learned, simply did not exist.

The family would have to settle on a generic brown coffin that lacked any exterior symbols of the deceased’s Dakota heritage.

“It’s unfortunate, but there are no Native funeral casket-making companies anywhere in this country,” Gill calmly explained to the Goodsells.

“We’re always having to deal with these ‘wasichu’ (whites) for everything and they just don’t understand us,” responded Nola Ragan, the widow’s sister.

Before departing, the family handed Gill a small collection of Goodsell’s clothes — including a traditional, white-ribbon shirt made by the deceased’s grandson — to dress his body when he returned to Minnesota.

Gill politely thanked the family and stepped out into the clear, star-filled night on the reservation.

On the long return trip to Minnesota, he could smell the faint scent of the man’s clothes next to him on the passenger seat, and he rehearsed what he would say at his ceremony.

Finally arriving home past 10 p.m., Gill had a late supper with his wife, Bonita, and then laid out a suit for the next day’s journey back to the reservation.

Complete Article HERE!

Long-term caregivers experience an anticipatory grief and peace


I have been learning more about long-term illness, caregivers, grief and peace. Two experiences were so helpful:

• I was invited as a guest speaker by the Last Chapter Group at Bacoa (formerly Barrington Area Council on Aging) co-facilitated by Pam Pellizzari, memory programs director, and clinical social worker Deb Torres. But I ended up learning a lot from them! This is a great group with thoughtful members. It is open free to caregivers, both family and professionals, as well as bereaved and community members. It meets once a month on Zoom. Contact Pellizzari at (847) 881-0477.
• A friend who explained to me, one-on-one, about the experience of being a three-year caregiver at home to her beloved husband. How totally encompassing it was, what she did, and her own recovery from that. How she feels she did the right thing, and how giving of yourself as a caregiver does bring peace.

I am very grateful to these three. I learned so much:

Grief may be quite different for long-term caregivers — those who have devoted themselves to taking care of a spouse or parent for several years because of a slow, but terminal illness — and for medical professional caregivers working with memory patients.

The big differences seem to be:

• Anticipatory grief: They know it’s inevitable and coming in a year, two years, three years, so they partially prepare emotionally for it ahead of time. This often softens the blow when the day comes. I knew about this concept of course, but didn’t realize how important it really is to long-term caregivers.

• A sense of relief that comes for both their loved one and for themselves.

• A sense of “finding peace” or “being at peace.” Peace not just for the beloved, but a sense of “being at peace” for the caregiver herself or himself.

I remember at the after-burial dinner for my own dear husband, a friend came up to me to console me. She had been a caregiver at home to her husband who died after a long terminal illness. She said how sorry she was and then added: “In a way it’s a relief.”

I was horrified. My husband had died from a totally unexpected stroke. I just said, “Oh no, I would have helped him forever, even if all he could do is listen to me reading him a nice story.” I had no idea what she meant.

So I just walked away to join the others, not understanding what she had experienced herself as a longtime caregiver to her dying husband. I did not understand.

I also did everything I could for my beloved Baheej, but it was not at-home caregiving. I lived with him day and night in his hospital room for his last seven weeks. He was taken to the hospital the night of his stroke and never came home again. I just moved in the hospital with him. The luggage from our trip the day before was still in the car, so I had clothes, and what I needed to stay. And after a few weeks, after his second stroke, which was in the hospital, I was told he would not recover. But I just stayed with him and did what I could to keep him company and watch over his care. But still, his death was so sudden.

So I am very grateful for this helpful group and friend. And it makes me think of the importance of support groups; It could be your own family and friends, or it could be a community support group for bereaved. It’s important to select a group that fits with your own experiences and situation, so that you can learn from others and they are having discussions that help you and each other.

Actually I belonged to a women’s support group that used to meet on Monday mornings at a local Lutheran church. They invited me as a guest speaker, and when they asked me to join, they were such nice and interesting women, I did! We had great discussions and usually went out to lunch together after the meeting. We don’t meet now of course. I miss them.

The point is: Grief takes many forms, many manifestations. And it’s important to support those dealing with prolonged caregiving — probably someone right in your own friendship circle, your neighborhood, your interest groups, your church or your own family. The more we understand, the more we can extend ourselves and help others.

Complete Article HERE!