Category: Caregiving

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‘Treasure life’: wisdom from a former AIDS nurse

Wendy McNerthney, facing camera, who worked for more than 24 years at Bailey-Boushay House, hugs fellow registered nurse Hilary MacGregor at McNerthney’s retirement party.

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Wendy McNerthney was the longest-serving nurse at the Bailey-Boushay House, the only local place that provided end-of-life care for patients with AIDS in the ’90s. In the first four years she was there, hundreds died and no patient was ever discharged.

 
It’s a little easier now.

But back in the early ’90s, someone died every 72 hours at the Bailey-Boushay House in Seattle’s Madison Valley.

AIDS. It was always AIDS. The year that Bailey-Boushay opened, it was the No. 1 cause of death for men aged 25 to 44 in the United States. Half the people who died of AIDS in King County died at the facility.

Wendy McNerthney was there for almost all of them, bearing witness to one of the worst health-crises the country — and the city — had ever seen.

“It was like a plague,” McNerthney, 64, said recently. “I just thought, I can take it one day at a time, one hour at a time. Many times I came home sobbing.

“But, I thought, ‘I can’t walk away.’ ”

After more than 24 years, though, McNerthney has retired from Bailey-Boushay. She was the longest-serving nurse the facility has had, having spent more than two decades tending to patients and sitting with partners who would eventually become patients themselves.

She comforted relatives who would come straight from the airport or the road, struggling to absorb what came in three, stunning blows: Their son was gay. Their son was sick. Their son was dying.

“It’s such a delicate moment,” McNerthney said. “I would say, ‘No matter what, put all that aside. He’s your son. You’ve got hours or days to tell them you love them.’ ”

Executive director Brian Knowles is going to miss that gift: “Wendy just looks around at everyone in the room and understands what they need,” he said. “And that is a very special thing.”

McNerthney arrived at Bailey-Boushay in October 1992, six months after it opened — the first facility in the country devoted to end-of-life care for people with AIDS.

She had taken her nursing exams in July of that year, and while she waited for her results, worked as a graduate nurse at a nursing home in North Seattle.

But she kept thinking about the patients at Bailey-Boushay, a place she had heard about from one of her professors.

“It sparked my curiosity,” she said. “I thought, ‘What a need for nurses, to help these people. And how wonderful to have a home for them.’

“They needed compassionate, caring nurses to care for them at the end of their lives. And I needed to learn more about AIDS.”

She arrived to find patients ranging in age from their 20s to their 70s. The average stay was four to six weeks, during which 80 percent of the patients burned with fevers that reached 103 degrees.

For the first four years she was there, no patient was ever discharged. They just died. One every 24 to 72 hours, adding up to about 300 deaths a year.

McNerthney administered cold packs and spent night shifts making protein milkshakes with two or three blenders going at once. She touched patients with lesions caused by Karposi’s sarcoma, a cancer that developed on lymph nodes. She stayed close.

“I wasn’t scared,” she said. “You learned good standards of care — hand-washing, gloves, gowns and isolation carts.

“You’re just there on the front lines.”

Most of the patients came straight from hospitals.

“There was no other place,” said Knowles, the executive director, adding that some home-care agencies and hospice facilities wouldn’t accept patients with AIDS. If they did, those patients received minimal or no care at all. Nurses refused to touch them. Dietary workers refused to go into their rooms and left their food trays stacked by the doors.

At Bailey-Boushay, 35 patients received round-the-clock care and were even allowed to bring in their own furniture. One patient’s room was featured in Metropolitan Home magazine.

Knowles called McNerthney “a connector.”

“She remembered everybody, and all the years she has been here, the sensitivity and the warmth …” he said. “She is so genuine. And when she looks at you, you can tell she’s right there with you. You can see it on her face.

“Many people can learn to be nurses, but there’s a compassion that has to be a part of you. You can’t pick that up anywhere.”

McNerthney was born in Winnipeg, Manitoba, and moved to Everett as a child. Her mother died when she was 15, and she looked after her younger siblings.

She was raised Lutheran, but religion didn’t matter to her when it came to caring for people who had been condemned from the pulpit, by politicians and by people in McNerthney’s own circle.

“I had no moral struggle with the disease,” she said. “It’s the people you were taking care of. So it was all about education.

“I wasn’t stern; I just quietly educated people who had valid questions. These aren’t AIDS patients. They are patients with AIDS.”

She also trained nurses who were new and nervous. Protect yourself, she told them. Go slowly. Try not to get distracted, “and don’t ever be hard on yourself,” she said. “You’re human.”

Even though the number of AIDS deaths has decreased and the disease is seemingly under medical control, things are no easier for McNerthney and her colleagues.

Bailey-Boushay now provides end-of-life care primarily to those with cancer, ALS and Huntington’s disease.

“There’s always a lot of tears,” McNerthney said. “We cry. But the patients are the ones that bounce you back.”

Now that she’s retired, she is planning a trip to Ireland with her husband, Pat, and might return to Bailey-Boushay as a volunteer. No matter her plans, the patients and the place will stay with her.

“Treasure life, treasure life,” she told me, when I asked what she had learned. “I feel so blessed that I could do this work, that I could help people who needed it.

“Anything you can do to help people, brighten their day, do it. Because you don’t know what the next day will bring.”

Or, she said, whether it will come at all.

Complete Article HERE!

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What does my family need to know about end-of-life care?

By Sunrise Senior Living

[T]he loss of a loved one is always a somber experience, but thankfully, due to the continuing advancements in health services, the number of Americans that are able to spend their final days in a comfortable and controlled setting is growing.

End-of-life care allows individuals to experience that final chapter in life with a dignified and calm feeling, as well as offer family members that peace of mind, support and a sense of comfort that can help ease that sorrow during this time. Being informed and conscious of this subject makes taking those steps in coordinating this care much easier and straightforward for everyone involved.

When is it time?
There are many conditions in existence that over time can become increasingly difficult and expensive to treat. This not only can be a burden for the patient, but can also create a painful and challenging experience as well. While deteriorating conditions and intolerable discomfort are two chief concerns when considering hospice care for a loved one, things such as complicated health care needs, sustained pain, and loss of mobility or capacity are also matters that should be taken into account.

It is hard to decipher the “right time” when deciding to make the decision to begin end-of-life care. Each and every family has a different approach and belief that can affect their decision. Ultimately, this choice is one that is deeply personal and involves tough choices for the whole group.

What does end-of-life care look like?
There are several types of end-of-life care available. Hospice care is for individuals that are nearing the end of their lifetime, with a terminal prognosis of six months or fewer. Palliative care is one that is more fitting for older adults living with a chronic condition and are in need of relief from the on-going pain and symptoms. In some cases, families may also choose to provide end-of-life care from home.

In either case, a full team of medical professionals and support staff work around the clock to make sure that patients are as comfortable and well-cared for as possible. Every facility is different, which means that nurses and doctors may be supported by home health aides, spiritual counselors and social workers depending on the circumstance.

With that being said, there are people dedicated to helping family members navigate this new challenge and providing guidance with whatever might come next.

Paying for end-of-life care
The Kaiser Family Foundation reported that hospice care is covered by Medicare for eligible older adults, usually individuals with a terminal diagnosis. This organization makes affording end-of-life care easier for many families.

Other than that, Medicaid, private insurance and other sources of payment such as a pension or retirement fund may be used to pay for these services. Families should discuss different payment models and work with a knowledgeable provider to uncover all available options.

Selecting the right partner
One thing families should understand when facing the possibility of end-of-life care is being aware of all available resources available that offer support and guidance during this difficult time. The care professionals at Sunrise Senior Living can advise and help coordinate care for an older loved one. With the help of Sunrise, the best, most appropriate end-of-life care can be identified and any transition can be made as smooth and as comfortable as possible.

Complete Article HERE!

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Songs of farewell

In her new book, Hallowell Singers founder Kathy Leo tells how music comforts the dying, and offers lessons for the living

By Richard Henke

BRATTLEBORO—Kathy Leo, the founder and director of Hallowell Singers, last month published On the Breath of Song: the Practice of Bedside Singing for the Dying, a book that offers guidance and insight into the practice of singing for the dying and their families.

Through the telling of true stories and over a decade of experience in song and spirit with the Hallowell hospice choir, Leo has written a guidebook for anyone offering end of life care or helping a loved one die.

“After many years of teaching workshops to newly forming or active hospice choirs, the decision to write a guidebook through personal experiences of being with the dying became clear,” writes Leo at the Hallowell website, www.hallowell-singers.org.

“On the Breath of Song is a way to get close to the bedside to explore your personal relationship with death and dying. It serves hospice singers, music therapists, chaplains, compassionate caregivers, hospice workers, and palliative care professionals.”

Birthing and dying

Although Leo has now been working with hospice care for over 15 years, she was a midwife in the Southern Vermont area for more than a decade before that. She didn’t find the change too great.

“You are in the same space: birthing and dying have similar energies,” she explains.

Shortly after Leo began her volunteer work for Brattleboro Area Hospice, musician Peter Amidon and others were invited to the bedside of a Putney woman under her hospice care to sing for two nights.

Leo writes about the experience: “In a small house on a back road in southern Vermont, a woman is dying at home surrounded by her loving family. It is a winter evening in 2003, a few days before Dinah’s last, a group of friends from the community and her church, gather around her bed to sing. She joins in. She mouths the words when her voice fails her …

“As we sing around her, Dinah is held up by her loving husband Fred, a daughter on either side of her. … [Hallowell Singers] formed after two visits to Dinah Breunig’s bedside in her home, her family welcoming and present, during the final days of her life on earth.”

Hallowell is a chorus of volunteer singers trained to practice the therapeutic art of singing for the dying. Based in Brattleboro, the chorus serves hospice clients through its affiliation with Brattleboro Area Hospice and the greater community by request.

Leo, who had been Dinah’s hospice volunteer, answered the call from Noree Ennis, the patient care Coordinator of Brattleboro Area Hospice at the time, to create and organize a “hospice choir” that would be available as a service to anyone who desired singing at the end of life as an offering of comfort.

Peter Amidon and Mary Cay Brass agreed to serve as musical directors.

‘Gifts of grace’

Almost 40 singers signed up to be trained and taught how to sing at the bedside of a dying person. Usually 4 to 6 singers go to the home of a man or woman in hospice care.

“We do not want to overwhelm the space,” Leo says. “We know how to make ourselves small in energy. Before we enter a home, we quiet ourselves internally, which can take a lot of work initially. Once there, we offer songs that are gifts of grace for everyone involved, the dying, their family and the singers.

“Beautiful things happen with music. Singing also creates a special space for a family to come closer with the dying. So much happens in this space that is rich with life, death, and mostly love.”

Leo explains that Hallowell doesn’t call these events performances, but rather, “sings.”

“We tell people not to applaud, that is not what we are here for,” she says.

The name for the Hallowell Singers comes from a song Brattleboro therapist Stephen Spitzer wrote about a friend from Hallowell, Maine, who died from a bee sting. “What he wrote so embodies the spirit of our mission that we took it as our title,” Leo says.

Since its inception in 2003, Hallowell has served hundreds of families in the Southern Vermont community.

“Little did we know at the time that as Hallowell grew and evolved, it would become a central ’practice’ in our lives, a way to learn how to live fully and with deep gratitude,” Leo writes. “Our songs and our quiet presence bring comfort and offer support to the dying. The response of those we sing for is often emotional and calming.”

Hallowell still works very closely with Brattleboro Area Hospice. “They are more like family, really, and they helped to shape and form us through support and training,” Leo confesses.

But Hallowell also has its own hospice training.

A careful approach

Leo felt the need to address specific issues that arise when singing at dying persons’ bedsides. Hallowell trainings deal with how to prepare for a sing, both individually and as a group, how to involve the family, and how to approach what Leo calls “the sacred space of dying.”

“We need to learn to enter and leave the space seamlessly,” she says.

Soon enough, the word about the special work that the Hallowell Singers were doing began to spread.

“We were asked if we could do a workshop on how to start a choir in Middlebury,” Leo says. Soon more groups were forming choirs that asked for Hallowell’s help.

“We have also helped to launch a still growing number of hospice choirs throughout the New England region and across the country by teaching workshops, offering guidance and counsel, and being available for continued support for developing hospice choirs,” Leo writes. “We are honored to be a strong model for the growing movement of the practice of bedside singing for the dying.”

Besides the numerous smaller workshops, for the past six years, Leo and Amidon have given a weekend “deepening workshop” once a year at the Rowe Center in Massachusetts.

“These are always well-attended, and people come from all over the country, even someone from New Zealand who wanted to start a Hallowell choir there,” Leo elaborates. “This movement, which began in Putney, now is spreading all over the world. Who can explain it? Perhaps it was just the right time, but it is pretty amazing.”

True stories of tenderness

Leo has often been exhorted to write a book offering guidance and insight into the practice of singing for the dying and their families.

“I first was asked to write up a guidebook years ago, but I kept telling everyone and myself, ‘It wasn’t the right time, it wasn’t time, it wasn’t time,’” she says.

But finally Leo realized that she had no real excuse for delay, and the result was On the Breath of Song.

Although the book is intended to help others working with hospice choirs, this is definitely not a book a rules. Instead, Leo says she has written a book of true stories filled with tenderness and emotion.

“Singing for the dying is intuitive, where strict rules have no place,” Leo says. “Consequently, when I came to write down all that I have learned over the years working with Hallowell, I realized that the best manner was through stories which inform the teaching. At the heart of these stories are the songs we sing, and the spirit of love we bring to this practice.”

Complete Article HERE!

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San Francisco Is At The Forefront Of Another Frontier: Care For Dying People

Volunteers make seasonal mandalas, a ritualistic symbol in Buddhism, out of flowers in the garden of the SF Zen Hospice Project’s Guest House.

by Jay Barmann

In large part due to the enormity of suffering and loss of life during the height of the AIDS epidemic here, San Francisco has emerged two decades later with new models for providing palliative and humanistic care at the end of life, one of the best of which is represented by the tiny San Francisco Zen Hospice Project in Hayes Valley. The hospice facility, in a Victorian on Page Street, grew out of the 54-year-old San Francisco Zen Center just up the street, and began in 1987 as a way for Zen Center members to care for young AIDS sufferers and provide them with a peaceful and comfortable death. (A similar organization, Maitri, sprung up around the same time near the Castro, and continues to this day.) As a new piece in the New York Times Magazine puts it, the Zen Hospice Project “originated as a kind of compassionate improvisation,” and it has served as inspiration and proving ground for Dr. B.J. Miller, a 45-year-old clinician at UCSF who has emerged as a passionate and charismatic advocate for a new kind of end-of-life care. As he tells the Times Mag, his goal, and that of the Zen Hospice Project, is to “de-pathologize death.”

Miller is unique as a spokesperson for this new type of palliative care in that he had his own brush with death early in life, and wears the scars from it very prominently. At the age of 19, while a sophomore at Princeton, he and a couple of friends went climbing on a New Jersey Transit commuter train after a night of drinking. When he reached the top of the train, an electrical current arced out of a charged wire into Miller’s metal wristwatch, sending 11,000 volts through his body and severely burning his arm and two legs. He would soon become a triple amputee, but the experience of being in the burn unit for months and talking himself back from near death profoundly changed how he saw life, especially when he went to medical school. It’s something he describes in a TED Talk from 2015 that’s garnered nearly five million views. In it he says “we are all patients,” using the definition of the word as “one who suffers,” and says he hopes to bring a design sensibility, “that is intention, and creativity, to the experience of dying.”

A year after the Brittany Maynard case gained national attention, around the time that California’s death-with-dignity law was passing through the state legislature in mid-2015, the Times first discovered Miller and the Zen Hospice Project, describing it as “a fascinating, small-scale experiment” in an age when end-of-life care typically falls to hospitals. Hospitals, however, are not programmatically designed to comfort and care for the needs of dying people — they’re designed to make people well and send them home — and families often panic in the face of death causing disruptions in the final months of a person’s life. While, as of 2015, 44.6 percent of all deaths took place in hospice settings, 40 percent of those patients only spent a few days there following stays in intensive care — meaning, as the Times put it, there’s “not enough time to take full advantage of the technique’s soothing possibilities.” Add to that figure the fact a 2013 study that found that more people are choosing to die at home, however they still are transported back and forth to hospitals three or more times in the final 90 days of their lives — time that would be better spent quietly with loved ones, or doing something pleasurable. Also, a hospice experience should free friends and family from the burden (and occasional trauma) of being caregivers, so that they can simply be there with the person who is dying.

That is the focus of the SF Zen Hospice Project’s Guest House: sensory pleasure. Patients are allowed to smoke, outdoors, if they wish. The smell of freshly baked cookies wafting through the house is a frequent one. People play musical instruments. And in a case described in detail in the new Times Mag piece, a 27-year-old man dying of mesothelioma, that care involved welcoming in the man’s throngs of friends, their Bud Light and their video games, decorating his room like a “late-20’s-dude’s room,” letting him go on one last Sunday sailing trip with his friends despite being in significant pain, and helping him plan a wedding for his best friends to be performed in the small garden next door to the Guest House. This all happened in the course of nine days, after which he would be dead. And the wedding went on anyway, and what followed, in the hospice Guest House, was a combination wedding reception-funeral, a celebration that was “mixed up, upside-down and unexpectedly joyful.” “It makes you happy for a place like the Guest House where such things can happen,” Miller tells the Times Mag, via a meeting with colleagues, “a roof where these things can coexist.”

Shortly thereafter Miller stepped down as executive director of the Zen Hospice Project in order to pursue related goals. He’s raising seed money for what he’s calling the Center for Dying and Living, a kind of design lab focused on new models for palliative care, and he’s co-writing a field guide to end-of-life care.

These days the Zen Hospice Project’s Guest House is still only six beds, two of which are reserved for UCSF patients, and the others funded through donations and sliding-scale fees from patients. In contrast to hospitals, which may charge thousands of dollars per day to house and care for a dying patient for an indeterminate period, stays at the Guest House cost the organization about $750 a day, proving that their model is not just better from a human standpoint, but also an economic one, even if traditional insurance does not tend to cover the cost of residential hospice.

It’s something the rest of the country, and the insurance industry, needs to consider, and maybe Dr. Miller will be the one to build it on a larger scale here in the Bay Area, before long.

Complete Article HERE!

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Deaf and dying: How a volunteer team brings palliative care comfort through communication

The first experience Monica Elaine Campbell had with palliative care was helping a woman who had lost her ability to speak because of throat cancer.

 

Monica Elaine Campbell

By Blair Crawford

Campbell, profoundly deaf since birth, is an excellent lip reader and staff at an Ottawa hospital asked if she could interpret the dying woman’s words. The woman had been communicating with paper and pen, but now was too weak even to do that.

“I was very hesitant. Then I thought, well, the least I could do is give it a try,” said Campbell, who is able to speak despite never having heard a word herself. “I put my hand on her right arm and said, ‘I’ve never done this before. I will try my best.”

Campbell leaned close as the woman mouthed her words. Campbell repeated it back and had the woman nod yes if she had understood correctly. She spent five hours with the woman, relaying messages between her and her family and the medical team. She was able to interpret about 85 per cent of what the woman told her.

“I came away a different person,” Campbell said. “I was very touched by the experience.”

The dying woman had not been deaf, but the experience got Campbell thinking about the communication needs of people like herself: the deaf and hard of hearing. A few years later, Campbell was asked to help a deaf friend who was about to receive bad news about her cancer diagnosis.

“I didn’t know much about palliative care, but she was struggling with her terminal illness,” Campbell said. “I thought, my goodness, what if that was me? I thought, I should talk to my deaf friends about death and dying and what our experiences have been.”

Those conversations led Campbell and her friend, sign language interpreter Christine Wilson, to start up the Ottawa Deaf Palliative Care Team, a group of volunteers that provide end-of-life care for the deaf and hard of hearing and their families. In 1999, she enrolled in palliative care courses at Algonquin College with two Deaf colleagues (the Deaf use a capital D to refer to the sub-culture of people who communicate with sign language; “hard of hearing” are those who have lost some or most of the hearing but can still use some speech, sometimes augmented with sign language; the “deafened” or “oral deaf” have lost some or all of their hearing, but either learned to speak before their deafness or, like Campbell, learned to speak despite it.)

Christine Wilson, left, is a sign language interpreter. She and Monica Elaine Campbell, who is completely deaf, founded the Ottawa Deaf Palliative Care Team in 2009.

The group then received additional training from Hospice Care Ottawa. It took five years to get up and running, but since 2009, the Deaf Palliative Care Team has helped inform and console the deaf and hard of hearing, breaking through their sense of isolation at the most frightening, most challenging time of their lives.

Last winter, Campbell was honoured with the Order of Ontario for her work advocating for the deaf in palliative care as well as the June Callwood Outstanding Achievement Award for Volunteerism.

“It’s a pretty scary thing to be in the health-care system,” said Lisa Sullivan, executive director of Hospice Care Ottawa. “You can imagine what it’s like for people who are deaf and to be at the end of life or actively dying and not have a way to communicate.”

Team members have also volunteered to work with the hospice to mentor new deaf volunteers. And they’ve been there, too, when some of their own members have been in palliative care.

The rights of the deaf are protected by the Ontarians with Disabilities Act, while federally, the rights of the deaf  were recognized in a 1997 Supreme Court of Canada decision. Working toward the passage of a Canadians with Disabilities Act was the first item last fall on Prime Minister Justin Trudeau’s mandate letter to the Minister of Sport and Persons with Disabilities, Carla Qualtrough.

It’s a long way from how the deaf used to be treated. Wilson learned to sign because she was the hearing daughter of two profoundly deaf parents. She was just a young teenager when her father died of a brain tumour in 1964.

“For the four months he was ill, I bet he never fully knew what was wrong with him, what was happening or that he was going to die,” said Wilson, a former nurse who now works as a sign language interpreter.

“There were no such thing as interpreters, back then. The night my dad died, they never even called my mother to go and spend that last time with him. It was his brother, my uncle, who was with him and he was the one who called the house and said to us, as kids, ‘Tell your mother that your father has died.’

Even when Campbell’s own father died of cancer in 1993 in a Prince Edward Island hospital, she found herself struggling to understand what was going on and feeling excluded from the discussions.

“The doctor had a meeting with the family, but I wasn’t able to follow what they were saying. I felt very isolated,” she said. “I was very bothered that there wasn’t a system at the hospital to sit down with us as a family.”

The Ottawa Deaf Palliative Care Team sometimes has to get creative in its service. One woman they helped was deaf and had almost no vision. She was able to communicate in a form of sign language tapped on her skin, but the team had to devise a way to identify themselves. Campbell let the woman feel the heart-shaped pendant she wears. One doctor had the woman touch her long braids and stethoscope. Another let her feel his distinctive watch with its wide wrist band. It was the only way for the woman to know who she was communicating with.

“Our modus operandi is that you don’t get ready to serve the deaf when they show up,” Wilson said. “You have to be ready. At first, (the hospice) was very resistant to have Elaine or other members of our team be there as volunteers. But the more they worked with us, the more they could see that it just made sense. Yes, maybe it wasn’t going to be as clear communication … but it’s all rubbed off on the staff. They know when a deaf person comes, we will become a team so that one of us is there all the time.”

There’s a certain pride in being Deaf, but for Campbell that pride took a long time to come. A native of PEI, she was 15 months old before doctors knew for certain she could not hear. Her parents were determined that she would learn to speak, patiently drilling her for hours on how to form words. She attended a school for the deaf and grew close to her classmates, who were like another family to her, but didn’t learn to sign until she was an adult.

“It made me change my perspective. Growing up I felt like a broken person who didn’t quite fit in,” she said. “Then it just hit me one day – I’m a human being who happens to be deaf. I was 38 before I came to be at peace with myself and who I am.”

Complete Article HERE!

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After a 73-year union, two hospital beds pushed together offer the best comfort

Retired Army Col. George Morris, 94, is receiving end-of-life care at Fort Belvoir Community Hospital (Virginia), where his wife, Eloise, 91, is a “compassionate admission,” lying beside him.

By Tara Bahrampour

[F]or 73 years – through wars in Europe and Asia and civil rights battles at home, through the assassination of a president and the rise of rock-and-roll – they shared a bed.

He’d be gone sometimes, flying missions during World War II and the Korean and Vietnam wars, but he always came back to her.

So now, as he lies in a hospital bed unable to say or do much, she lies beside him.

Like many hospitals, Fort Belvoir Community Hospital, where retired Army Col. George Morris, 94, is receiving end-of-life care, allows family members to sleep in a patient’s room on a fold-out couch. But for George’s wife, Eloise, 91, a cancer survivor who has suffered two broken hips and a broken shoulder, that would be hard.

So the hospital made a special exception when they admitted him this month: They admitted her as a patient, too – a “compassionate admission,” their doctor calls it. Standard rooms are normally private, but Eloise’s hospital bed was rolled in and pushed up against George’s – a final marriage berth for a husband and wife who met as teenagers in rural Kentucky in the late 1930s.

He spotted her first.

“I was a sophomore in high school, and I’d gone to see a play in a country school,” said Eloise, sitting up in her reclining bed, a birdlike woman in oversize bifocals whose hair is hardly touched by gray. George rested in his bed beside her. “He saw me and went home and told his mother, ‘I just met the girl I’m going to marry.’ He said, ‘I looked her over real well and I couldn’t find anything wrong with her but one crooked tooth.’ ”

A movie date and a picnic followed. Eloise can’t recall the movie – she was too distracted by the thrill of holding his hand in the dark.

The picnic, however, was unforgettable.

“Here comes George and he had something in his hand with a crank on the end and I wondered what this was.” It was something she’d never seen before – a portable phonograph, and when he turned the crank it started playing “Sweet Eloise,” a popular song at the time. He turned that crank all afternoon. “Oh, I thought that was great.”

The town of Russell Springs, Ky., where she lived on a farm, was eight miles from Columbia, where he lived. He didn’t have a car, so he’d walk the distance to see her. By 15 she was wearing an engagement ring and had no doubts about what she was doing.

“He had thick eyebrows and devilish eyes, and I hadn’t seen any guys my way that good-looking,” she said. “I thought that he was more intelligent than any man I’d ever met.”

They married and had two sons and a German shepherd who played outfield in family softball games. After stints in Tokyo and Alaska, they eventually settled in Annandale, Virginia.

Eloise Morris, married 73 years, wears a ring she chose after she lost her original wedding ring. (It was found many years later.)

Those legendary eyebrows are wispy now, the devilish eyes half-closed as he lies beside a tray of juice and apple sauce. But every now and then as she spoke he chimed in, his voice rising alongside hers like an echo.

“We had some lean times but some great times,” she said. “We didn’t have a lot of material things, but we could sure have a sweet time. There was lots of love around. George could always make me feel so protected.”

It was a stark contrast from her youth – her father left her mother before she was born, and she grew up an only child, helping her mother and grandparents tend to the sheep and cows and chickens.

As partners, the two complemented each other. “He was strong-willed. I don’t mean bossy-bossy. But his father would say, ‘Eloise knows how to make George think he’s boss.’ Some people might call that tricky, but I know how to keep people happy. I know how to keep George thinking that he’s making the decisions.”

Being married to an airman had its challenges. He took her up once in a P-51 Mustang fighter plane and it nearly killed her. “I couldn’t hear and I was very sick to my stomach. When he did the roll, that was fine, but when he did the loop, well, I kind of blacked out and my mouth opened and I just couldn’t stand it.”

George had a lot of friends who didn’t come back from the wars. During Vietnam, “he said one of the saddest things was when he brought the dead soldiers home – he said that was heartbreaking because they were so young.” He retired in the 1970s.

The secret to seven decades of love? “Be happy, whether you’re happy or not. Laugh.” Like they did the time they were posted somewhere new and they arrived before their belongings – including their sheets and pillows.

“We cut up the newspaper and put our heads on one duffle bag, and every time we moved, the paper in it would rattle and we laughed all night,” she said, grinning. “We really, really loved each other. We were lonely, lonely when we were apart, and when he’d come home, it was just heaven.”

Their sons have since died – the older one three or four years ago, the younger one several months ago – and most of their grandchildren, great-grandchildren, and a great-great-grandson live in other towns. Although they visit sometimes, it is mostly just the two of them.

Admitting Eloise so she could be with George was not a hard decision, said the couple’s doctor, U.S. Army Maj. Seth Dukes. “We take care of the people who’ve taken care of our country,” he said. “And we extend that to their loved ones.”

At this point, Dukes said, George is dealing with a combination of medical issues, and the goal is to keep him comfortable.

For Eloise, it’s hard to see him unable to talk or eat much. “The expression on his face has changed; his eyes just look fixed,” she said. “It’s heartbreaking to see somebody lose everything, especially the days that he doesn’t know me.”

But her presence seems to comfort him. “He talks in his sleep, and when he starts I just put my hand on his and he stops.” And during the day, she talks to him. “Even though I don’t know if he can hear me, I always thank him for looking after me so well.”

An aide peeked in. Eloise seemed tired. So she did what comes most naturally: She lay down beside her husband and reached for him, their hands now mottled and roped with veins, but their fingers still knowing how to intertwine.

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Regina woman’s story reveals growing pains of assisted dying law

Jean Napali and her mother Ruth Schroeder.

 

By Jonathan Charlton

[I]n her last days, 93-year-old Ruth Schroeder lay in bed at Grace Hospice in Regina, slowly dehydrating herself to death because she wasn’t able to die on her own terms.

Schroeder had colon cancer and doctors declined to operate out of fear she wouldn’t survive surgery because of her age — an outcome she’d have been fine with, according to her daughter, Jean Napali, who lives in Vancouver. 

Partly that was because of the pain, but also because the painkillers made it hard to concentrate. Schroeder couldn’t really read, watch TV or even do the crossword puzzles she had long enjoyed.

“During the past year she had been making it very clear that she really was done,” Napali said.

Schroeder had talked with her family about ending her life, and with any doctor who would listen while she was in palliative care at Pasqua Hospital in June; she had followed the development of federal legislation for medical assistance in dying (MAID), which was passed by the Liberal government that month.

However, she then learned she had little time left.

“At that point mom felt very relieved that she only had three months to live and she kind of dropped talking about MAID because she was like, ‘There is going to be an end to this, maybe it’s not the route that I need to go,’ ” Napali recalled.

Schroeder lived at home for as long as she could over the summer, cooking her own meals and doing her own laundry with support from her children and a housekeeper. On Aug. 1, she fell in the middle of the night, aggravating the nerve centre on which her tumour lived; the lightest touch on her leg became excruciating. After two days in an emergency room, she was moved to the hospice. 

Napali is a mental health worker and her sister was a longtime nurse, so they were able keep their mom off drugs that harmed her quality of life. This included an anti-depressant Schroeder’s palliative team put her on after she expressed interest in MAID, Napali said.

The siblings feel their mother wasn’t taken seriously because of her age.

“As a family we were really floundering, trying to figure out how to put this in place. And it wasn’t until after she had died that we realized she could have signed the forms at the end of June when she was talking with the doctors about it and started the whole procedure,” Napali said.

When Schroeder told her she would stop eating and drinking, Napali called her mom’s doctor about ending her life. However, the doctor wasn’t available for a week. When she did arrive, Schroeder’s painkillers had been increased so much that while she knew her own name, she didn’t know the month and said the year was 1976 instead of 2016. The doctor deemed her not competent enough to consent.

“That upset us quite a bit because it was very clear that she was going to be in a lot of pain — that she was in a lot of pain — and that basically she would just be dehydrating to death over the next few days or weeks,” Napali said.

Saskatchewan Medical Association president Dr. Intheran Pillay.

The federal legislation does not allow for people to give advance consent, when drugs don’t cloud their judgment, for medical assistance in dying.

Because Schroeder wasn’t on any life-prolonging medications she could stop taking, it took her 16 days to fatally dehydrate.

“Somehow to me, that seems wrong, that she needs to suffer through that,” Napali said.

“If a dog was kept in a vet’s office to dehydrate to death for two weeks, everybody would be totally up in arms and be calling it inhumane. And that vet would probably lose his license. And yet for a person, that’s deemed acceptable,” she said.

“It was just really hard for us because as her children we knew what Mom wanted. She was ready to go and she wanted MAID but that wasn’t something that could happen for her. I don’t want other people to have to go through what we went through in terms of not having out mom’s wishes done.”

Aside from the roadblock imposed by the law, Napali was never clear on whether her mother’s doctor even agreed with MAID, and has come to believe most doctors in Saskatchewan won’t perform it. 

“I think doctors need to be really clear as to whether they are willing to go that route or not, and if they’re not they need to pass their patient on to somebody who is willing to take a look at that.”

The Saskatoon Health Region is considering a policy to protect the identities of health care providers who participate in medical assistance in dying, fearing that otherwise no one would be willing to provide the service.

The Saskatchewan Medical Association was unable to find any doctors who participate in MAID and were willing to be interviewed for this story. 

SMA president Intheran Pillay said some doctors are in favour of MAID, but others object and feel palliative care should be improved, believing that some requests stem from a lack of it. There’s no way of knowing what that split is, he said.

Jean Napali and her mother Ruth Schroeder.

Health care workers who provide abortions in the U.S. have suffered violence, and some fear similar retaliation around MAID, he said.

Some physicians may work in facilities such as Catholic Health Association hospitals which oppose MAID, and don’t want their beliefs public. Others don’t want their patients to distance themselves if they have different viewpoints, he said.

A person’s primary point of contact for MAID should still be their doctor, who can discuss all options to improve pain control and comfort, he said.

“In a majority of cases we’re able to keep the patient really well controlled with regard to pain. I’ve never, in the 24 years I’ve been in practice, had a problem in terms of referring patients to the appropriate specialist to get that patient the care that they need to make them comfortable.”

People seeking information can look up the websites of the College of Physicians and Surgeons of Saskatchewan, the Canadian Medical Association, the SMA and the Saskatchewan government, he said. SHR this month approved its MAID policy, which includes a decision-making guide.

Eight people in the province have received MAID since the legislation passed, according to the health ministry.

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