Tag: End of Life Care

Caretaker and end-of-life doula Lisa Jeansonne helps people who are dying stay in their homes rather than having to go to a hospital.

By Liz Welter

[J]ohn “Jack” Zito, 96, doesn’t give up easily. When his wife of 73 years was facing her final days last year, Zito put every ounce of energy and effort he could muster into caring for her so that his beloved Noni could die at home.

Noni died in May; she was 95. It was about a year before she died, as her health was rapidly deteriorating, that Lisa Jeansonne began helping Zito. An experienced end-of-life caregiver, Jeansonne’s gentle presence and calm demeanor was the balm Zito sought as he cared for his ailing wife.

Zito’s eyes moistened and he dabbed at them with a handkerchief in a recent interview, remembering his wife and the care Jeansonne lovingly gave her.

“That is why Lisa is here now,” Zito said. “She looks after me. When that time comes, she’ll be here to help me, too.”

Jeansonne would go on to receive specialized training from her employer to become an end-of-life doula — a professional who can provide comfort to a dying person, and support to that person’s family. It’s part of a growing recognition across Wisconsin and nationally that caring for the dying is a skill — for some, a calling — and can be a pillar for family members.

For Zito, Jeansonne’s care for Noni, given name Margaret, helped forge a lasting emotional connection.

A World War II veteran and retired Chicago business owner, Zito has the strong, clear voice of a younger man. He enjoys puttering about the kitchen cooking, verbally sparring with Jeansonne as they duel in Scrabble games and “letting her” drive when the duo completes household errands. Noni’s death has left a chasm in Zito’s heart and Jeansonne’s companionship partially fills the void.

The Zitos literally landed in Door County after summers of sailing the Great Lakes when they retired to their favorite boating site. They immersed themselves in church and community activities in northern Door County from their home nestled in the woods near Sister Bay. Noni avidly painted watercolors of the area’s fabled scenery and wildlife, while Zito happily assumed the housework and cooking duties.

For decades their health was good and the couple relished visits from family and hosting barbecues with friends.

Old age began to catch up with the Zitos in 2016 when Noni was diagnosed with congestive heart failure. Zito said he knew the end was coming, but he was determined to care for Noni so that she could die in their cherished home in the northern Door County woods.

The pressure to care for his dying wife was fatiguing and it was emotionally draining to watch Noni decline, he said. Although Zito insisted to his children, who are scattered across the nation, including in Door County, that he didn’t need help, his family arranged for a part-time caregiver from Advocates In-Home Care in Sturgeon Bay.

Since Zito was adamant he alone could care for his wife, he devised a plan. When the hired caregiver arrived for the first day of work, he was going to be friendly, and explain he had everything well managed.

That plan slowly melted when Jeansonne knocked on Zito’s front door about two years ago. Her handshake was firm and she looked him in the eye while explaining her role to help him.

Later that day, a bond began to develop as Jeansonne and Zito sipped coffee at the kitchen table while Noni slept. Lisa said to Jack, “I know you. Your kids are about the same age as me and we used to play together in the summer.” Lisa refreshed his memory with tales of summers boating, swimming and fishing off of the Ephraim marina with his kids.

Zito’s eyes filled with tears as he told the story of that day, but he was also smiling. From the very first day, Zito said, he could see that Jeansonne’s quiet presence and easy manner was exactly the help he and his wife needed.

“That day, I saw how good Lisa was with my Noni, and, why she was practically like family,” Zito said.

New movement to die at home

While Jeansonne was hired as a caregiver, she also assumed a role that she has fulfilled dozens of times during earlier positions with families — giving specialized, attentive care to a family member who was dying.

The care Jeansonne provides isn’t medical. Rather, it focuses on doing whatever is needed to ensure the dying person is comfortable. It’s a holistic approach that offers emotional, spiritual and physical support to clients and families.

Jeansonne and other caregivers at Advocates In-Home Care are trained as end-of-life doulas. It’s part of a new movement to enable the dying to remain in their homes.

Similar to a doula who cares for and supports a woman through her pregnancy, an end-of-life doula supports a patient and the family through the dying process, said Marggie Hatala, a registered nurse and end-of-life doula in Door County.

Hatala also is a certified trainer for Doulagivers End of Life Elder Care Training Program and founded Doula Givers of Door County more than a year ago to offer free seminars about end-of-life care and also the training for certification as an end-of-life doula — or, as it is sometimes known, a “death doula.”

The end-of-life doula is there to listen and develop a relationship with the patient that transcends the illness and may last days, weeks or years depending on the prognosis, Hatala said.

“Dying and death has become institutionalized, that everyone dies in a hospital or nursing home,” Hatala said. “Most people want to die at home and they don’t want to die alone.

“People are awakening to the fact that there is a way to have a good death.”

About 25 percent of the Door County population is 65 years or older, according to the state data from 2015. In the same year, about 12 percent of the state’s population was 65 years or older.

Based on population trends, Wisconsin’s elderly population in the state will grow 72 percent by 2040, according to the Department of Health Services.

“This is happening throughout the United State — as the baby boomers are aging, there is going to be a growing need for in-home care,” Hatala said. “Door County already has a large aging population that wants to grow old in their homes.”

A former hospice nurse, Hatala said she was frustrated by being limited to providing medical care when she saw that patients wanted and benefited from having a person consistently with them as they were dying.

“I felt a true need to remain with a patient and their family without any agenda, simply to be present to them,” Hatala said. She became trained as a doula and later completed the certifications to teach and train others after she moved to Door County about five years ago.

In 2017, Hatala’s first class of caregivers from Advocates In-Home Care, including Jeansonne, became certified through Doulagivers of Door County program. Besides training to provide physical, emotional and spiritual support to the dying and their families, doulas also receive training to support family members following the death.

End-of-life doula care is paid for privately unless there is a portion of the service that is covered through the caregiver services provided to a client. The cost for end-of-life doula care is about $20 an hour.

Death can be frightening for an ailing patient and it also raises anxiety for family uncomfortable with death, said Mary Beth Williams, a hospice nurse and caregiver with Advocates In-Home Care. “Most people do not want to die alone, and they want to die at home where everything is familiar with people that they love.”

Doulas work in tandem with medical professionals and hospice programs to provide care that integrates the emotional, spiritual and physical support clients and families seek. It’s different from being a hospice nurse, Williams said, because while the nurse in hospice care focuses on a patient’s medications, a doula’s role is to provide a patient with comfort.

“As a doula, you’re aware of the pain (a patient has) and the medications they are taking, but a doula finds other ways to provide comfort; for example, if someone is short of breath, a fan on their face or elevating their head might be beneficial,” Williams said.

Hatala also conducts online training classes for people throughout Wisconsin.

The participants in Hatala’s online classes are as diverse as the regions of the state where they live. They include a paralegal from Sheboygan, a retired minister from Manitowoc and a practitioner of alternative pain management therapies from Green Bay.

They shared similar stories of being drawn to doula care after exposure to aiding the dying and finding it was a fulfilling and gratifying experience.

The Sheboygan paralegal, Shannon Shaurette, was exposed to hospice care while her father was dying from cancer seven years ago at a Milwaukee hospice.

“The hospice workers were beyond amazing to my dad, my mom and the rest of our family … and after my father died I thought about volunteering at a hospice, but the timing wasn’t right,” Shaurette said.

A friend from Vermont told Shaurette about the growing movement to die at home with the support of an end-of-life doula. She started the classes because she wanted “to be able to bring the same feeling of comfort, peace and love to others, as the staff at the hospice did for my family,” she said.

A way to a ‘good death’

For Zito, the care Jeansonne gave his wife made her “almost family.”

Prior to the day Noni died, she had been talking and sharing memories with family who had gathered at the Zito home. When she slipped into a deep sleep May 21, family members stayed at her side, holding her hand throughout the day. Zito was gone for a few minutes to make more coffee in the kitchen. When he came back, Noni had died.

“It was very peaceful,” he said. “People were with her, she was holding her son’s hand and she had a smile on her face.” Zito said he will be “eternally grateful” for the hospice care and Jeansonne’s attention to details that provided Noni and his family additional comfort.

Since Noni’s death, Jeansonne has continued to provide part-time care for Zito.

“I do the cleaning and we do grocery shopping, trips to the library or the hardware store together. We like to play Scrabble and Jack loves to read,” she said. “Jack can pretty much take care of himself, but I’m here for the help he does need.”

When Zito’s time arrives for his final journey, Jeansonne said, she will be there to help him and his family.

“He’s a wonderful man and adored his Noni. It’s a gift I can give him to make him as comfortable as possible,” she said.

Learn more about the end-of-life doula program

To learn more about Doulagivers of Door County, call Marggie Hatala at 920-495-1566 or check the website www.marggiehatala.com

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Our aversion to the inevitable will only prolong our pain

by Emma Reilly

[D]eath lurks in the corners of our lives, threatening to emerge from the shadows at any moment.

When it bursts into our day-to-day existence — sometimes unexpectedly, occasionally anticipated — it is almost always unwelcome.

In Canada and the western world, we have reached a point where we will do almost anything to convince ourselves that death doesn’t exist.

“Death is the last great taboo,” writes Julia Samuel, a grief psychotherapist and founder patron of Child Bereavement UK, in her bestselling book “Grief Works.”

“We seem happy to talk about sex or failure, or to expose our deepest vulnerabilities, but on death we are silent,” she writes. “It is so frightening, even alien, for many of us that we cannot find the words to voice it.”

But experts who work in the field of death and dying say our increasing tendency to ignore death, no matter the cost, is hurting us.

Our death illiteracy means we are woefully unprepared to handle the growing number of aging people in our society, says Denise Marshall, associate professor of palliative care at McMaster University and the Medical Director of the Niagara West Palliative Care Team and McNally House Hospice.

According to Marshall, unless we begin to talk about death — to “befriend it,” as Samuel says — we will see suffering on a massive scale.

“This is like the perfect storm in North America,” said Marshall. “There will be too many people with too many needs, and not enough of us able to support them. We won’t know what to do with all of these dying people in frailty.”

Where did we go wrong?

When it comes to death and dying, where did we, as a society, start to go wrong?

First, Marshall says, it’s important to understand that our aversion to death is a uniquely postmodern, western phenomenon. While risks like communicable diseases or complications from childbirth used to bring death into our homes, in our modern society, death is something that happens far beyond the reality of our day-to-day life: in an impoverished or war-torn country, perhaps, or behind the closed doors of a hospital.

“At this very moment in other parts of the world, there is a huge death literacy — for often tragic reasons,” she said. “People are dying in famine, in war, in all kinds of things. The idea that death is a part of life, and it’s always there, has not been removed from the whole world.”

The tendency to eradicate death from our everyday lives is also a relatively new historical development, Marshall added. Just picture any death scene in a historical movie or novel; the dying person is likely to be at home, encircled by friends and family, rather than in a hospital surrounded by doctors. It has only been in the past hundred years or so that death became so highly medicalized.

Marshall dates the removal of family members from their loved ones’ deathbeds to the 1920s — the same time doctors started to better understand the infectious nature of tuberculosis.

“It’s the first time in the Western World that health care said, “You, the community, must stay out,”” said Marshall. “And so began the beginning of institutionalized death. It’s not that long of a history.”

Clare Freeman, the executive director of the Bob Kemp Hospice, sees families coping with death and dying every day. Residents only spend an average of 15 days at the hospice before they die, but Freeman says that some families are so wary of acknowledging death that they will avoid discussing it at all costs.

“Sometimes, residents will tell our staff things they feel afraid to tell their loved ones — such as, “I know I’m dying. They don’t think I am.””

“They don’t want to make their family sad,” added Trudy Cowan, the manager of events and community engagement at the Bob Kemp Hospice. “It becomes this elephant in the room.”

Freeman questions whether the declining role of religion in our lives may also be another factor in our denial of death. Most religions include rituals that mark the various stages of life, including birth, our entrance into adulthood, marriage, and death. Without these rituals, we may lose the touchstones in our lives that allow us to acknowledge these times of transition.

“The disconnection to faith in peoples’ lives has made us think, “Oh, we’ve escaped death,” Freeman said. “We’ve done a lot of things in society to remove ritual — to make it about individuality and choice — and that process of losing ritual is actually impeding our literacy about death and dying.”

Freeman argues that there is a cost to our death avoidance. She suggests that our society tends to put a timeline on grief, expecting family members to bounce back as quickly as possible after the death of a loved one. This turns a natural process — grieving — into a medical disorder.

“We somehow think that we’ve cured death. Then, since we’ve cured death, we’ve also cured mourning. So, if you’re sad or mourn beyond three days, we’re going to send you to a therapist. It becomes a clinical thing, whereas mourning and grief is a natural process,” Freeman said.

End-of-life care

For concrete strategies to help combat our society’s death-avoidance, Marshall points to the work of her mentor, Dr. Allan Kellehear.

Kellehear, a medical and public health sociologist, was the first to suggest that end-of-life care should be the responsibility of the entire community — not just medical professionals.

His groundbreaking 2005 book, “Compassionate Cities,” argues that workplaces, charitable organizations, clubs, churches, and community members should work alongside doctors and palliative care clinicians to care for the dying and bereaved.

The most effective way to foster this, says Marshall, is by “adopting a good old-fashioned public health approach.” Jurisdictions across Canada should invest in advertising, workshops, and awareness campaigns encouraging more conversation about death.

“We need for end-of-life care in Canada what we have done with smoking cessation. It’s a good analogy,” she said. “It takes time — this is a psychic shift.”

Many European countries are already using this approach.

In Ireland, coasters reading “Dying for a beer?” that described 10 ways to support a bereaved friend were distributed in pubs across the country as part of a public health campaign. In the United Kingdom, death education is part of the kindergarten curriculum.

Systemic changes like these are essential in order to handle the growing number of Canadians approaching the end of their lives, said Marshall. Currently, 70 per cent of deaths occur in hospital — and there’s simply not enough space in palliative care units, hospitals, and hospices to handle a major influx of the sick or dying.

In Canada, death rates continue to climb each year. Statistics Canada reports that the number of deaths across the country climbed from 654,240 between 2000 and 2002, to 722,835 between 2010 and 2012.

Unless our society learns to help care for the dying, Marshall says we will reach a crisis point where people will be abandoned at the end of their lives, left alone without medical or community support.

“Why is it a crisis? Because I don’t think we’ve fully grasped the fact that this isn’t going away. This is not a blip in society,” Marshall said. “We are living longer, with more complexities. One-hundred per cent of us, though, are going to be at end of life.”

Marshall points to China as an example of a jurisdiction facing a disproportionate number of dying people that completely outstrips the younger age group’s ability to care for them.

“That will eventually be us. It will be every country,” Marshall said. “What we’ll risk seeing is huge amounts of suffering in ways we haven’t seen before. True abandonment.”

Death education

In Hamilton, there are those who are already engaged in the type of grassroots advocacy that Marshall espouses.

Rochelle Martin is a community death-care educator. Her passion lies in supporting the dying and their families.

Martin, who lives in downtown Hamilton with her family, helps families with what she calls “home-based death-care.” She advises families who wish to have a home funeral about the practicalities of washing, dressing, and laying out the body of the person who has died.

Martin does not get paid for her work as a death-care educator, nor does she directly handle bodies (which would require her to have a funeral director’s license). Instead, she says she sees herself more as a “community renegade who whispers in peoples’ ears “you can do it.””

“I operate more like a lactation consultant — I can’t breastfeed your baby for you, but I can tell you how,” she said. “And I can really empower you to do it, because I think it’s so important.”

To earn an income, Martin, a registered nurse with a specialty in psychiatry and mental health, commutes to work at the Toronto General Hospital.

Her professional work as a nurse dovetails with her “renegade” work as a death educator. In fact, it was her experiences working in an emergency room supporting the families of people who have had sudden or tragic deaths that led her to begin her role in death education.

Martin noticed that family members have a natural disinclination to see their loved ones after they have died, especially if they have experienced trauma. But after a small amount of encouragement, however, most are able to have the closure of seeing their loved ones’ bodies.

“It was amazing and beautiful to watch. If they’re given even a tiny bit of encouragement or permission, people really know how to engage with death in a way that they initially thought they couldn’t or shouldn’t.”

There are those who think her work is strange, dangerous, unsafe, or possibly a health hazard — but she sees her work as an important tool to help our society become more comfortable with death. Unlike the traditional funeral industry, where our loved ones’ bodies are tended to behind closed doors (often at a cost of thousands of dollars), Martin says she acts as a gatekeeper who helps others deal with death in a practical, meaningful way.

“Any time anyone has the opportunity to engage with death like that, and finds out that it’s not scary, it’s not dangerous, it’s legal — every experience like that puts us further ahead.”

When the community becomes involved in a death, everyone benefits.

In October 2016, Monica Plant’s 91-year-old mother, Polly, suffered two strokes and fell twice in her home. By the end of that week, Polly, who still lived in her west-Hamilton home of 38 years, had been declared palliative.

Plant was relieved when her mother received permission to die at home, just as Polly had wanted. But for Plant, it created some logistical difficulties. The Community Care Access Centre provided her with three hours of care a day — which, as Plant says, “was something, but it left quite a few gaps.”

She had acted as her parents’ live-in caregiver for almost seven years and was deeply fatigued. She had already been through the emotional and daunting process of providing end-of-life care for her father, who had died at home the previous April.

Plant found herself at an emotional crossroads: she felt extremely grateful that her mother was allowed to live at home for the last few weeks of her life, but she was unsure about whether she could sustain the sort of round-the-clock care her mother needed.

What happened next is almost a textbook example of the kind of community involvement that Marshall says is so essential.

Plant reached out to her neighbours, her out-of-town siblings, and parishioners at Polly’s church. Plant’s neighbour went door-to-door along Undermount Avenue, asking residents if they would like to help ease Polly into her final weeks of life.

Within days, Plant’s support system grew to 25 households who would visit with Polly, do yardwork, bring meals, and providing Plant with some comfort and respite. Neighbours circulated emails containing meal plans and visiting schedules and swapped stories about how good it felt to come together as a community.

“(Polly) was somebody who liked things to happen organically, and that’s how it happened,” Plant said. She compares the effort to an urban-barn raising — a constructive, collective effort that allowed her mother to die in the comfort of her home.

The experiences enriched both Plant and her neighbours. As well as creating an interconnection between those who were involved in Polly’s care, it offered a glimpse of what we will all face at the end of our lives.

“What I think the byproduct of being able to die at home was that people on the street got to see what aging looks like. This is what happens at all the stages,” Plant said. “If you’re taken out when you’re retirement age and you go off to a retirement home, the neighbourhood doesn’t get a chance to see what happens when you age.”

Polly died at home on Nov. 30, 2016, in the arms of Plant and her twin brother — the way she had always wanted.

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