05/3/18

SENIORS COPING WITH LOSS OF INDEPENDENCE

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Help Seniors Cope with the Loss of Independence

A loss of independence is a fear many seniors have. When this fear is realized, there are several ways caregivers need to help. According to an AARP study conducted in 2012, 57% of seniors over age 70 do not find it easy to live alone and need help with daily tasks. This loss of independence can have a toll on senior’s psychological and physical well-being. Most people begin to live and perform daily life tasks independently by the age of 20. About 50 years later, many find that independence is no longer safe or viable. The loss of independence seniors face can often result if grieving, frustration, and other emotional upset. Caregivers can help seniors by understanding the process.

Types of Independence Seniors May Lose

As seniors’ bodies and/or minds degenerate, they can experience a variety of types of losses. Their independence can be impacted in ways that change their lifestyles and even their understanding of the world. Some types of independence seniors may lose include: • Mobility • Ability to live alone • Memory • Comprehension/decision-making skills • Strength to perform daily tasks • Energy to clean or cook • Social life • Sight • Hearing

How to Help Seniors Cope with Increased Dependency

Relying on other people’s assistance for basic tasks like bathing or common activities like driving can be frightening and frustrating for seniors. With the loss of independence, seniors also tend to lose some control over their schedule, freedom, preferences, and more. Caregivers can help make decreased independence more bearable using strategies like these:

Maintain a Standard of Dignity

Requiring assistance with activities like bathing or shopping does not mean that seniors need to give up their dignity. Caregivers should always guard seniors’ privacy. It is also wise to use the terms a senior does when referencing body parts, activities, or even hygiene products.

Ask Instead of Telling

Caregiving for someone who has lost a type of independence is a supportive role, not a leading role. Caregivers should ask seniors about their preferences, needs, etc., instead of telling them. For example, if a senior cannot cook for themselves, a caregiver should ask for input for meal planning. Give Options for Caregiving Since dependence requires trust and can be very personal in nature, it is important for seniors to have choices. Learn if a senior prefers same-sex caregivers, certain routines, etc.

Stay Organized and Consistent

Dependence means a loss of control. Seniors have to wait on others for assistance, which can be stressful. Caregivers should remain consistent in their routine so that seniors don’t need to be anxious about when or how their care will be provided. Organize necessary materials so they are accessible to seniors who cannot mobilize independently as well.

Offer Reminders That You Can Be Counted On

Depending on other people for help, especially with essential tasks, requires trust. This can cause seniors anxiety and stress. Remind a nervous senior that he or she is in good hands and is being taken care of to assuage their fears.

Ask Instead of Telling

Caregiving for someone who has lost a type of independence is a supportive role, not a leading role. Caregivers should ask seniors about their preferences, needs, etc., instead of telling them. For example, if a senior cannot cook for themselves, a caregiver should ask for input for meal planning.

Complete Article HERE!

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05/1/18

Family Caregivers Finally Get A Break — And Some Coaching

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Lorena Bradford (left), head of accessible programs at the National Gallery of Art in Washington, D.C., leads a session of the museum’s Just Us program. The program gives adults with memory loss and their caregivers a chance to explore and discuss works of art in a small-group setting.

By Mindy Fetterman

For today, there are no doctor’s visits. No long afternoons with nothing to do. No struggles over bathing.

At the National Gallery of Art in Washington, D.C., a group of older adults — some in wheelchairs, some with Alzheimer’s — sit with their caregivers in a semicircle around a haunting portrait of a woman in white.

“Take a deep breath,” says Lorena Bradford, head of accessible programs at the National Gallery. She’s standing before “The Repentant Magdalen” by Georges de La Tour.

“Now, let your eyes wander all over the painting,” Bradford says. “Take it all in. What do you think is going on?”

“I think she looks sad,” says Marie Fanning, of Alexandria, Va., who has Alzheimer’s.

“Yes. Yes, she looks sad,” Bradford agrees.

“This is such a gift,” Bill Fanning, Marie’s 77-year-old husband and caregiver, says of the outing.

Across the country, community groups, hospitals, government agencies and nonprofits are starting to do more to support at least some of the estimated 42 million friends and family members who are the primary caregivers of adults and children who have disabilities, are recovering from surgeries and illnesses or are coping with Alzheimer’s and other chronic diseases.

The National Gallery’s program is part of the trend focusing on the health, well-being and education of these caregivers, who are usually unpaid.

“We know that involvement with art improves well-being,” says Carolyn Halpin-Healy, executive director of the Arts & Minds program for caregivers and patients at the Metropolitan Museum of Art in New York.

“In our own research for persons with dementia, we see a reduction in apathy,” Halpin-Healy says. “For caregivers, we see less isolation and a reduction in stress.”

She co-founded the program with a Columbia University neurologist, Dr. James Noble, in 2010 at the Harlem Studio Museum in New York. The Just Us program in Washington is a spinoff of that program. Other museums in New York and Dubuque, Iowa, have similar programs.


Research on other museum-based programs like the National Gallery’s Just Us has found that analyzing and discussing art in small groups reduces apathy among people with Alzheimer’s, and reduces stress and isolation among their caregivers.

A bipartisan law signed by President Donald Trump in January calls for a national strategy to address the needs of caregivers, who are primarily women and provide 37 billion hours in unpaid care to relatives or close friends.

All those hours are valued at $470 billion, according to an AARP study. The law will require the Department of Health and Human Services to set up an advisory council and develop a blueprint for government action on financial and workplace issues, respite care and other caregiver issues.

At the same time, 42 states and the District of Columbia have passed their own laws requiring hospitals and other nursing facilities to provide training for caregivers who perform medical tasks, and to record them as the “caregiver” when patients are admitted or released from hospitals or nursing facilities.

The laws’ required designation benefits patients and their families, proponents say. In states without such a law Alabama, Florida, Georgia, Idaho, South Carolina, South Dakota, Vermont and Wisconsin (Kansas’ law takes effect in July) — patients can be dismissed from the hospital without family members being told or briefed fully on what care the patient needs.

The CARE Act is “more than just a law,” says Elaine Ryan, AARP vice president of state advocacy and strategy. “It’s a change in the practice of health care.”

Helping the helpers

Family caregivers are almost two times more likely to have emotional and physical problems than other U.S. adults, and three times more likely to have productivity problems at work, according to a 2015 study. The more intense the care, the greater the effects, the researchers found.

Dr. Eric Coleman, a gerontologist and recipient of a MacArthur Foundation fellowship in 2012, created the Care Transitions Intervention model. The national program, based at the University of Colorado in Denver, trains coaches to help caregivers ease the transition of a patient to home care. The coaches are usually social workers, nurses or others hired by hospitals and other facilities to work directly with caregivers.

Coaches talk to the caregiver before patients are discharged from a hospital. Then they have a one-hour coaching session at the patient’s home, and three follow-up phone calls. Studies have shown that having transition coaches can drop readmission to hospitals by 20 to 50 percent, says Coleman.

Even if a caregiver is with the patient when doctors give instructions in the hospital or clinic, the medical jargon can go right over their heads, Coleman says. “We tell people that for the next 24 to 48 hours, here are key things you need to do. Then we follow up at home,” he says.

Caregivers do more than make meals; they also perform medical tasks, like giving medicine, taking blood pressure, changing bandages and more. Yet they receive virtually no training, Coleman says.

“I’m a physician, and when I take care of my mom, I have an endless loop in my head,” of the to-do list, he says.

A 2015 study by AARP found that 46 percent of family caregivers perform medical/nursing tasks, 78 percent of family caregivers manage medications, and 53 percent of family caregivers serve as care coordinators. The majority told researchers they’d received no training in those tasks.

Caregivers are “the backbone of our health system,” says Alan Stevens, a gerontologist and psychologist who trains caregivers, in partnership with Baylor Scott White, the largest nonprofit hospital company in Texas, and a group of agencies that deal with elderly issues across the state.

“If caregivers go away, we have a problem,” Stevens says. “It’s important to better understand their needs — and to help them.”

Linking hospitals with caregivers

Dignity Health Systems, a large nonprofit hospital company in California, is partnering with the nonprofit Santa Barbara Foundation to provide caregiver coaches. At any given time, 1,000 caregivers are being coached, says Kathleen Sullivan, vice president of acute care services for Dignity.

Caregivers are now officially identified as a partner Dignity’s health team, Sullivan says. “They’re given a badge, they have a tote bag with information, and the hospital knows who to contact.”

Her group works with nonprofit aging agencies to provide in-home coaches, she says. “When people get home from the hospital, they’re just exhausted. They don’t remember what they were told in the hospital.”

In Virginia, the Bay Area Council on Aging and a consortium of four other groups and five hospitals are training caregiver coaches using the CTI program. The key to successful coaching of caregivers is to take training into the home, says Kathy Vesley, of the Bay Area Council on Aging in Fredericksburg, Va.

“Some of these folks are very ill, and they’re managing 12-plus medications,” Vesley says. “You get into the home and they say, ‘Here’s my shopping bag of medicines.’ And it’s literally a shopping bag.”

The consortium has seen 26,000 patients and caregivers over the past 2½ years. In that time, rates of readmission to the hospital have fallen from 23.4 percent to 9 percent, she says.

Coaches help with food, medicine and video training for how to do medical procedures, and help solve issues like how to get patients to appointments with doctors.

Out in rural southeastern Virginia, transportation takes a whole new meaning when your driveway is half a mile long,” Vesley says.

Having fun helps, too

Caregivers also need a little fun and relaxation, says Jason Resendez, executive director of the Latinos Against Alzheimer’s Coalition. About 8 million Latinos are caregivers for their family members, Resendez says, and nearly 2 million are caring for family members with Alzheimer’s.

To bring some of those caregivers together for fun, Latino groups in Los Angeles recently partnered in producing a comedic play, performed in Spanish, about a son who is taking care of his mother. Meanwhile, in Chicago, the Latino Alzheimer’s and Memory Disorders Alliance holds caregiver trainings and free dance classes — where caregivers can learn to dance salsa.

“It’s not just about translation,” Resendez says. “It’s not just about handing out pamphlets.”

Complete Article HERE!

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04/29/18

Death doulas provide comfort on final journey: ‘We know how to die’

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End-of-life doulas fill an emotional gap between doctors, family and attitudes about dying. 

Christy Marek, a certified death doula from Lakeville, is part of a new field that reflects gradually more open attitudes toward death.

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We should be better at dying.

That sounds judgmental, but it’s more akin to wishful thinking.

While death is a certainty, it’s rarely a goal, so we tend to resist, to worry, to grasp at new treatments or old beliefs.

But the emerging death doula movement offers another option: We can’t change the destination, but we can improve the journey.

The term doula is more linked to childbirth, describing someone present during labor to help a mother feel safe and comfortable. There’s no medical role; doulas are companions and listeners. They attend.

End-of-life doulas, also called death doulas or death midwives, similarly are attuned to a dying person’s emotional needs.

“It’s about filling a gap that the system doesn’t acknowledge,” said Christy Marek, an end-of-life doula from Lakeville. “The system is designed to tend the body. But when you get into the lonely feelings, the mess of real life, the expectations and beliefs around dying — those things don’t fit into the existing system.”

In some ways, death doulas signal a return to earlier times, when ailing parents lived with children, when life-extending options were fewer.

“Death was more of a ritual, really laboring with someone as they were dying,” said Jeri Glatter, vice president of the International End of Life Doula Association (INELDA) in New Jersey.

Family and friends “felt a sense of acceptance and completion and a knowledge that they had fully honored someone,” she said. “It’s the most loving act that they could do.”

Over time, though, “we became a very medicated society — and thank God for that. I don’t want to diminish that,” Glatter said. But medical options can create a sense of disconnect with our inevitable mortality. When those options are exhausted, “we say we’ll house them, make sure they have medication and have a bed that goes up and down.

“But people are saying, ‘I don’t feel OK about this.’ ”

Marek is the first end-of-life doula in Minnesota certified by INELDA, credited with creating the first death doula program for hospitals and hospices in 2003. It offered its first public training in 2015; last year, 700 people attended 18 sessions. Several other groups in Minnesota and elsewhere offer training and doula directories.

Glatter said the trend has roots with those who used birth doulas in the 1980s.

“These people now are burying their parents. Just as with birth, as we labor into the world fully engaged in that process, they’re saying, ‘I want to be fully engaged in this process.’ Doulas are the bookends of life.”

How can we do this together?

What does it mean to be fully engaged? Whatever the dying person wants it to mean.

“Is the person having their own experience, instead of trying to meet the expectations of the family?” Marek asked. “I’m there to create a space for the person who is dying to ask, ‘How can we do this together?’ ”

One woman, for example, asked Marek to tell everyone that she wanted acknowledgment — a greeting — each time someone entered her room, “even though it may look like she’s sleeping.”

Marek added, “I have no agenda other than reflecting to that person what they are saying, what they are feeling. I can give directions to family and friends, which is a comfort to the dying person because then people around them know what to do — and they feel listened to.”

As part of a new field, doulas occupy a niche among doctors, family, hospice and other factors. Sometimes, doulas fill practical needs, gathering paperwork or helping with funeral plans, particularly if relatives are distant, either geographically or emotionally.

More often, though, their roles are more personal: creating a vigil environment, writing letters to loved ones, helping family members recognize the signs of dying such as a change in breath and, finally, helping survivors deal with their loss.

Glatter said that doctors or hospital personnel sometimes worry that a doula will infringe upon medical decisions. But doulas have no medical role, and may even be able to provide information that doesn’t come up in medical conversations, “such as, ‘Do you know there’s a son with a restraining order?’ ”

Doulas’ lack of medical standing also enables consistency. Doctors may change. Hospice care may be suspended. “But a doula provides a continuity of care no matter what treatments are being done or not,” Marek said.

Dying as a creative process

Marek, 47, appears to wear not a speck of makeup. The physical transparency mirrors her comfort with the emotions that dying can expose. But it took her years to reach this point.

With a degree in child psychology, she intended to work with youngsters. Then she met a child life specialist, a field of which she’d never heard, describing someone who works with children with acute, often fatal, illnesses.

“It was like a lightning bolt went through me,” she said. “I knew that someday I would work with people who are dying. And it scared the pants off me!”

She went on to do other work, in the course of which she explored yoga, shamanism, writing, painting and more. She studied to become an anam cara, from pre-Christian Celtic spirituality that translates as “soul friend.”

Every few years, the idea of working with dying people surfaced, but never took hold. Then, five years ago, she learned about applying doula principles to the dying process. This time, the idea came cast as “the creative process at the end of your life,” and her path was clear.

“I feel like this has been following me my whole life,” Marek said. She took the training through INELDA, which includes vigil planning, working with the survivors, and self-care for doulas themselves. She founded a business, Tending Life at the Threshold.

“As doulas, we’re trying to normalize the experience of death,” Marek said.

She recalled one woman who said that her mother would love it if Marek would read the book of Psalms or a Hail Mary. “And I told her, ‘I can certainly do that. But it would be more meaningful if you did.’ ”

Once family members and friends learn that it’s OK to “lean into the pain,” she said, they may find a sense of comfort and ease with dying that, in turn, proves a gift to their loved one.

Another support system

Karen Axeen had been sick for what seemed like forever, after years of breast cancer and ovarian cancer and other chronic illnesses.

After spending almost all of 2016 in the hospital, she decided to enter hospice care. She also decided that she wanted a doula at her side.

“She kind of fell into the idea, talking with the hospital social workers,” said her daughter, Laura Fennell, who lives in Marshall, Minn. “I don’t live close by, so I think it was really helpful for her.”

Working with Marek, Axeen developed what’s often called a legacy project. In this case, she wrote several letters to each of her six grandchildren, to be read as they grow older.

“She wrote letters to be read on their 16th and 18th birthdays, on their wedding days, on the first day they have kids of their own,” Fennell said.

“I think I probably would have been lost after my mom had passed away, but Christy had everything organized,” she added. “It’s definitely a great service for those who don’t have family in the area.”

End-of-life doulas “are another support system,” Fennell said. “It was important for Mom to be able to get to know someone closely and have them walk her through the final process of life.”

Axeen died on Sept. 23, 2017, at age 57.

‘We know how to die’

Some death doulas volunteer with hospices or churches. Others work in hospitals, while others set up private practices.

Glatter mentioned a California prison where inmates with life sentences became end-of-life doulas “because they wanted to be able to care for their own,” she said. “They’re really an extraordinary group of men who wanted to pay their debt to society by helping other inmates as they die.”

An article in Money magazine included death doulas among “seven new jobs that reflect what’s important in 2017.” Also listed, compost collectors and vegan butchers.

The death doula trend reflects gradually more open attitudes toward death. Surveys show that 80 percent of Americans would prefer to die at home if possible, but few are able to. Yet the landscape slowly is changing. Hospital deaths slowly declined from 2000 to 2010. In that time, deaths in the home grew from 23 percent to 27 percent. Deaths in nursing homes held steady at about 20 percent.

The Centers for Disease Control suggested that the shifts reflect more use of hospice care. As the dying process becomes, for some, more grounded in the home, end-of-life doulas may become more familiar and, in Marek’s vision, help make death a natural part of life.

She reached that vision, in part, during an outdoor meditation project she began in 2014. For 1,000 days, she meditated for 20 minutes outdoors, no matter the weather. (It’s on Instagram as wonderofallthings.)

“Sometimes I’d be thinking, ‘This is awful. But that’s OK,’ ” she said. “It helped me develop a tolerance for whatever is happening, and to stay close to the fact that none of us is immune to the cycles of nature, including death.

“If you can sit when it’s uncomfortable — to be able to sit in the unknown — that’s huge.”

While family members may not be at peace with someone’s death, she added, they can be at ease with it as a natural outcome of life.

“One thing I believe firmly is that we know how to do this,” she said. “We know how to die, like every creature of nature does. We just need to get out of our own way.”

Complete Article HERE!

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04/23/18

Dying with Dignity: A look at the life of a hospice nurse

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BY ZACK WAJSGRAS

The final months of a person’s life are a confusing time for both the person and his or her family. Not only do final preparations have to be made, but the emotional stress of impending loss leaves many overwhelmed as grief makes tough decisions increasingly onerous.

Often, families seek professional help in the form of assisted living centers to alleviate the burden as their loved ones age. But once a patient receives a diagnosis that he most likely has less than six months to live, a new option becomes available: Hospice care.

Lee Read, a case manager with Hospice of the Piedmont, manages more than two dozen hospice patients at the Greenbrier and Hollymead locations of RoseWood Village Assisted Living centers, most of whom have dementia. Her organization, a community-based non-profit headquartered next to Sentara Martha Jefferson Hospital, focuses on end-of-life care for patients living all across Central Virginia. Read’s ultimate responsibility, and the company’s vision statement, is to make sure “nobody dies alone or in pain.”

Lee Read speaks on the phone at the RoseWood Village assisted living home on Greenbrier Drive near the nurses work station. Read’s job involves constant calls with doctors, family members of patients, insurers and other Hospice of the Piedmont staff.

In doing that, she manages the medications, equipment orders, triage care, dietary requirements and everything else her patients need to remain comfortable. She also serves as a liaison for the insurance companies, doctors and family members involved with her ever-changing caseload. While most healthcare professionals develop relationships with their clientele, hospice workers watch almost all of their patients die, making the emotional impact an additional challenge.

“I think over time you develop a thick skin,” Read said. “Otherwise, you could take on so much [emotion] that you become almost debilitated or think that you really can solve all those [health] problems, and [you] can’t.”

Dora Goldberg, 90, poses for a portrait at the RoseWood Village assisted living home on Greenbrier Drive after a game of bingo. Goldberg is one of Lee Read’s patients and suffers from dementia, like many of Read’s patients.

Read has a minimum number of required visits for each patient that is based on Medicare requirements, usually ranging from two to four times a week, during which she tracks each patient’s condition and determines what he or she needs. After six months, a patient can recertify if her condition is still declining and their diagnosis is the same, or she can “graduate” if her condition improves. She also works with a team that includes a social worker, a chaplain, certified nursing assistants and supervisors who specialize in different parts of the care process.Once a week, the team meets at the company headquarters to discuss the status of each patient and figure out what needs to be accomplished in the week ahead. Each meeting also includes a moment of silence, after which a ceremonial marble is dropped in a vase for each patient who has died since the last meeting. While it is marbles this time, each year a new symbolic object is chosen.

For Read, hospice was not her first career path. After graduating from William and Mary with a pre-med degree, she pursued a master’s in divinity from Columbia Theological Seminary in Georgia. She then went on to become a chaplain at the University of Virginia and Westminster-Canterbury of the Blue Ridge retirement home in Charlottesville.

But two events changed her perspective and led her back to health care. Her father received hospice care at the end of his life, and her 4-year-old son was diagnosed with cancer within a short span of time. Her son survived the disease, but the experience inspired her to go to nursing school. She also completed the majority of the requirements for a degree in social work, giving her formal education in nearly every function her team at Hospice of the Piedmont performs.

Lee Read holds a patients arm in the common room of the RoseWood Village assisted living home at Hollymead Town Center.

Her interest in helping people resulted in a career defined by “moving to different spots around the bed” of her patients, training her to fulfill both their spiritual and healthcare needs.

For Jeannie Holden, whose mother, Dora, is one of Read’s patients, hospice care came in a time of need.

“I can look back at the emotional part of that [decision] and how difficult it was. My mother was in the hospital, and she had sepsis, and we really didn’t think she was going to pull through,” Holden said. “Up until that point, I didn’t know that I really had any options.”

But after discovering Hospice of the Piedmont, that process became much easier.

“From the get-go, the care, the resources, the on call, the always being there from the social worker to their chaplain, [they] let me know they were there for me as well as my mother,” Holden said. “I always think that there’s more that I can do and I always have to be available, and they’ve helped me to realize that I am doing enough.”

For those who might be in a similar position, Holden said, it’s important to know the reality of hospice.

Lee Read (right) speaks on the phone at the foot of Juanita Burke’s, 97, bed at the RoseWood Village assisted living home at Hollymead Town Center. Burke, who had little strength left, died several days later.

“It’s not synonymous with death being imminent, [but] that it is certainly an end-of-life process,” Holden said. “Hospice can help you maneuver through and help you on the path to accepting that a loved one is at their end of life, [and] they help to make that quality of end of life good, to the best that they can.”

Even after dealing with death personally, professionally, theologically and medically, though, Read is still puzzled by life’s biggest questions.

“I certainly don’t have all the answers, and I’m not even that comfortable when I’m around people that have all the answers, whether it’s a religion or even a company. I like the questions and I like looking for the answers together,” she said. “It’s not my death; it’s not my journey. I am privileged to walk on the ground of the sacred journey of whoever is dying, but it’s their death.”

The families she works with often ask many of those same questions, to which she usually says, “I don’t know, but we’ll be here.”

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04/22/18

Hospice is different from palliative care but both are considered ‘comfort care’

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Comfort care at the end of life means managing symptoms, such as pain, anxiety and shortness of breath, says Janet Burda, advance practice nurse at Palos Community Hospital.

By Donna Vickroy

Despite confusion over what exactly constitutes “comfort care,” former first lady Barbara Bush’s decision to opt for it is opening doors onto some very important conversations, according to local end-of-life care experts.

Before she died Tuesday, the 92-year-old Bush had been struggling with congestive heart failure and chronic obstructive pulmonary disease, reports said.

When news broke last Sunday that she was opting for “comfort care” during her final hours, a flurry of questions followed.

Is comfort care not medical care? Is it a form of hospice? A form of palliative care?

Janet Burda, advanced practice nurse with Palos Community Hospital’s Home Health program in Palos Heights, said comfort care is a general term for keeping a patient comfortable at the end of life.

“Doing that means providing medical care to help with symptom management,” said Burda, who works with both hospice and palliative care.

Relieving anxiety, pain and shortness of breath are examples of comfort care, she said.

The other part of comfort care, she said, “is helping relieve anxiety for the caregiver.”

Often caregivers don’t know what to expect at the end of a loved one’s life, Burda said, and they often don’t know how to recognize symptoms of discomfort in a patient who is not able to talk or otherwise communicate. “We can help them with that.”

Palliative or hospice?

Palliative and hospice care both address the physical, emotional, medical, spiritual and psychosocial needs at a vulnerable time in a patient’s life, she said. They differ, Burda said, in terms of when and where they are applied.

Palliative care can begin at diagnosis, while hospice care is relegated to the last six months of life, Burda said.

Rachael Telleen, director of community outreach programs for JourneyCare, a hospice and palliative care organization that hosts presentations across the region including the south suburbs, said, “Palliative and hospice are both considered comfort care.”

Comfort care, she said, “is a term people are using now because it’s easier for doctors to initiate it.”

The word hospice can really scare people, she said. “So, instead, if we can approach the situation using the word ‘comfort,’ people are more accepting and more open to it.”

Telleen said while both palliative and hospice aim to manage pain and symptoms, palliative care is a support that may be provided while a person is still receiving aggressive treatments.

Hospice, on the other hand, is for patients who are no longer receiving aggressive treatments, she said.

“A patient in hospice receives a lot more services,” Telleen said.

Burda said palliative care allows the patient the option of going back and forth to the hospital. It consists of a team in the inpatient world and a team in the community setting, she said. They work alongside an attending physician.

“A person who has cancer and is receiving chemo or radiation can be under palliative care for symptoms such as pain, anxiety, shortness of breath, nausea, vomiting or diarrhea,” she said.

“A palliative care team can help manage those symptoms but the patient wouldn’t qualify for hospice because they are not necessarily terminal,” she said. “We’re kind of that stepping stone before hospice.”

While palliative care can go on for an extended period of time, hospice is for patients who are expected to live six months or less, Burda said.

To qualify for hospice, a patient must have a qualifying terminal illness and meet certain criteria, Burda said.

“Old age is not a qualification necessarily,” she said.

All of these options are typically covered by insurance and Medicare, Burda said. Hospice is a Medicare benefit and the components — medications, equipment, physician fees — are typically lumped together.

To some people, Burda said, palliative care sounds better, even if it would be more beneficial for them to be in hospice because of its around-the-clock access to a nurse and symptom care.

“But sometimes that scares people. They don’t want to lose that option to go back to the hospital,” she said. “They are not ready to accept that it is the end.”

Sometimes, she said, she walks people through different scenarios to help them picture what the journey will look like.

“At the beginning the patient could be doing fine. That’s the best time to get hospice involved because they get to know the patient and the caregiver and help them on this journey,” she said.

All end-of-life care should begin with conversation, Burda said.

People should take steps to educate themselves and family members about preferences and options, she said. More information on the Palos program can be found here.

“Talk to your family. Have that critical conversation about what you want the end of your life to look like. That affords you the control,” she said.

“There are people who say they don’t know and don’t care. That’s fine too but then designate someone to make those decisions for you when the time comes that choices need to be made,” she said.

Advanced directives

Telleen said Bush’s death came on the heels of National Healthcare Decisions Day, which was April 16.

She said the former First Lady’s passing has sparked conversation about end-of-life planning.

“We want people to know what they want before they’re in a crisis,” she said. “Making decisions in a crisis is the most challenging time for people to think clearly.”

Telleen said she encourages everyone older than age 18 to think about advanced care planning and to develop an advanced directive.

“That is being prepared in case something happens and you can’t speak for yourself. And that can happen when you’re 20 or 30. It doesn’t just happen to people who have an illness that is progressing. It could happen because of a car accident. It could happen at any point in an unexpected manner,” she said.

“Ask yourself, ‘If I couldn’t speak for myself who do I identify to speak on my behalf and does that person understand what your wishes would be?’” Telleen said.

Telleen said JourneyCare (https://journeycare.org/) provides a free document called Five Wishes available to residents in 10 counties in northeast Illinois to help them make advanced care decisions. For more information, go to journeycare.org/advance-care-planning.

Complete Article HERE!

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04/20/18

Death doula turns grief into guidance

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Last fall Catherine Hayes’ sister died in a helicopter accident; on April 26 she launches The Departure Lounge

After her sister’s untimely death, Lynn Valley resident Catherine Hayes has started a grief group called The Departure Lounge, set inside a large lodge cabin along the side of Hunter Creek.

By Maria Spitale-Leisk

These facts Catherine Hayes will always remember. It was the day her sister, her rock, was gone.

“She could always rally me in ways that nobody else understood,” says Hayes. “I had her for 43 years, you know, protecting me. Forty-three years – some people never have that, right?”

On Oct. 1 the early fall sun was warming Hayes’ face while she was singing her sister Karen Coulter’s praises to a mutual friend.

Coulter had already earned her engineering ticket to fix helicopters, but she wanted to go further.

“She had always wanted to fly,” says Hayes.

Coulter found her wings and got on with the air ambulance service in Alberta.

She soon found her way back to B.C. and took a job in Campbell River last summer. Coulter was in her element and loving life, according to her sister.

Nothing could prepare Hayes for the call that evening.

Friends were over for dinner and an unfamiliar number was illuminating her phone. Coulter’s helicopter had crashed in a remote forested area on the island, Hayes heard.

She tried to remain calm under the shocking circumstances, while hurrying to catch the next ferry to the island to be by her sister’s side.

In her mind Hayes thought: “I’m just going to go there and clean her up a bit and she’d be OK.”

On the ferry ride over Hayes had her life turned upside down.

“It is like being completely sucker punched just for no reason,” describes Hayes.

Her partner, Shawn, had only left her side momentarily to grab a coffee. Hayes’ cousin delivered the news over the phone while she was alone surrounded by strangers.

“He just said: ‘She died.’”

Her phone dropped and Hayes started screaming. The worst was yet to come.

When she got to Victoria, her sister wasn’t there, which sent Hayes on a wild goose chase.

“We couldn’t find her for a long time,” she recalls.

At first Hayes was told Coulter would be in Victoria. She wasn’t there. Maybe Comox?

Eventually, Hayes learned her sister’s body was still in the helicopter amongst the dense bush in pitch-black darkness.

The coroner wouldn’t arrive until daylight. It’s a scene that hauntingly plays over again in Hayes’ head.

Those first few days were the hardest. Hayes was presented with impossible questions that she couldn’t possibly prepare for.

Did she want the clothes her sister was wearing when she died?

“How do you respond to that?” says Hayes.

She would have recurring flashbacks of trying to reach her sister, but just going around in circles.

There was no beginning and end to her days – time blurred together into one vivid nightmare.

Hayes tried a host of remedies to turn her brain off at night – prescription and non-prescription – to no avail.

In the long days and months after the accident, along with overwhelming grief, Hayes had this nagging fear.

“Who’s going to go next? Is it going to be me? Is it going to be my son?”

The pain and anxiety became unbearable. Hayes compares it to being caught in an avalanche – you don’t know which way is up.

“And every time you do get a breath – you’re slammed again,” she says.

There is no textbook answer for how to handle grief. Hayes had someone say to her, you can’t be sad forever. But Hayes couldn’t see it any other way.

A framed collage of Coulter’s life leans up against a wall in Hayes’ kitchen. She curated the collage with some pictures discovered while cleaning out Coulter’s purse.

There’s a faded photo booth strip of the sisters goofing around in their teenage years.

“She probably even permed my hair and made me do it,” says Hayes, summoning a smile.

Hayes had no idea her sister had held on to the memento all these years in her wallet.

It’s these precious gifts from beyond the grave that buckle Hayes’ knees, often in the most unlikely places and without warning.

With the facts around her sister’s death seared into her brain, Hayes forgot how to take care of herself.

She says she felt like she was walking on her hands and eating with her feet. Nothing felt normal.

It was while hiking in Lynn Headwaters with a good friend that Hayes saw a faint light at the end of the tunnel.

The friend dropped the term “death doula” and Hayes was intrigued. She went home and immediately googled it.

“It was so clear to me that this is what I’m supposed to be doing,” says Hayes.

Except the timing for Hayes becoming a certified death doula was a little off, she admits.

You’re not supposed to take the program when you’re in the throes of grief, but Hayes pushed through to the other side.

She was a student learning about grief when she had already aced the painful exam.

Hayes took a three-month, end-of-life doula program overseen by the Conscious Dying Institute out of Colorado.

The serene setting for the course was an old brick building on the west side of Vancouver, with floor-to-ceiling windows and plenty of natural light.

Just like a birth doula, a death doula maps out the journey according to a personalized plan.

The doula helps a person with anything that might “flare up” during those last months, from tying up loose ends, to mending fences with a loved one, to pain management, to after-death arrangements.

Hayes said some people will take two weeks to answer the questions “because it really causes you to dig deep.”

This end-of-life direction goes deeper than a will or a medical representation agreement.

Families often hire a death doula a few months out from the main event.

A plan is made, called Your Best Three Months.

The doula helps their client check off items on their death wish list, covering off five elements of life from the spiritual to the physical.

Hayes took the test herself, as part of her training. One of the questions she faced was: While you’re still physically able, what do you want to do?

Hayes learned she wants to climb the Eiffel Tower. Step 1 – how is she getting there? She would have to budget her finances, take time off work, book a flight and find a place to stay.

Hayes took her travel planning one step at a time – just like her grief journey.

Half a year after her sister’s sudden death, Hayes is starting to put one foot in front of the other again.

She’s now a certified end-of-life doula and has started a grief group, called The Departure Lounge. The first meeting is April 26, set in a large log cabin with a fireplace nestled alongside Hunter Creek in Lynn Valley.

The guest speaker that evening will be her stepsister, Rev. Colleen Tanaka, who helped pull Hayes out of the grief fog.

There will be guided meditation. For people who want to share, they can talk briefly about their experience with grief. Afterwards, attendees can mingle together over coffee and tea.

It’s almost like matchmaking for the bereaved. After being introduced, Hayes is hoping some people will group up in the community on their own.

Hayes said her unfortunate experience makes her relatable to others who are grieving.

She’s already had an overwhelming response – more than 100 emails from people wanting to share their personal story of grief, including a dad who lost both sons in drunk driving accident.

“It’s like all of sudden I got this street cred,” she says.

Now that she’s getting stronger, Hayes wants to help as many people as she can. “We learn all kinds of things in school but there is nothing that teaches us about death and grief,” she says.

Hayes cites a Gord Downie quote: “Let’s turn our faces toward the sun and get whatever warmth there is.”

This November for her 45th birthday, Hayes will board a plane to Paris and soar towards the sky.

Complete Article HERE!

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04/10/18

There is more than one way to die with dignity

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By I

“Who are you here to see?”

On this day, I was at Mount Sinai Hospital, in the oncology ward. The receptionist I usually check in with wasn’t at her desk. I was being greeted by a volunteer. Dark hair, wide eyes and a smile like a child’s doll. High school co-op student, maybe?

I handed over my health card and told her my doctor’s name.

“I’m sorry, I don’t know who she is. What are you here for?”

Her smile widens.

“Because I’m a patient?” I retort.

I know I’m being rude. But it’s an oncology ward. What does she think I’m here for? To discuss the weather? The shortage of wheelchair-accessible parking spaces in the lot?

What I really want to say is, my doctor is a palliative-care specialist. I’m seeing her because I have cancer. I’m preparing for my death.

I don’t look like I have cancer, let alone the incurable kind. I have all my hair. My friends and husband assure me my colour is good. Dressed in my normal clothes and not the pajamas I currently favour, I look reasonably well – for a middle-aged woman who also has spinal muscular atrophy, a congenital neuromuscular condition.

I rely on a motorized wheelchair to get around and need personal support workers to assist me in all aspects of daily living. It’s been this way forever, but now I have colon cancer, and two external abdominal bags to collect various bodily fluids.

This, to put it mildly, complicates things.

My palliative-care doctor is a compassionate young woman who wouldn’t look out of place in a medical drama. She has been guiding me through my own recent hospital drama: I was readmitted to hospital a couple of weeks earlier, for yet another emergency.

I’ve been fighting off a major abdominal abscess for more than a year now. At one point, my abscess was so large, one of my doctors admitted surprise that I was upright. This is what initially led to my cancer diagnosis. A colon biopsy confirmed the cancer was malignant. In October, I was told my cancer was inoperable, despite 28 rounds of radiation.

At least it’s not metastatic. Localized, but nowhere else. For now, anyway. Plus, my surgeon tells me, I likely have years with this cancer. Not months or weeks, like some of his other patients.

The challenge now is the infection associated with the abscess. During this current crisis, antibiotics are working. What my surgeon can’t tell me is when the next infection will hit, or when antibiotics may fail.

Some patients reinfect every month, he tells me. I’ve done well, he adds. I tell him I couldn’t handle being hospitalized every month. He acknowledges I would need to evaluate my quality of life, if this became my reality. In that moment, my decision to seek palliative care early seems the smartest decision I’ve made in a while.

Like most Canadians, I had limited understanding of palliative care before I had cancer. To me, “palliative care” was synonymous with “you are about to die.”

That’s not the case. On my first palliative visit, the doctor explains the word is Latin for “to cloak.” She personally likes that, seeing her role as guide and protector to patients who are coping with the most difficult time of their lives.

I need her guidance. There is no clear path around how to deal with cancer while living with a disability. I’m used to being disabled. It’s my normal. My quality of life up to now has been exceptional, complete with a husband I adore, a sweet, sassy daughter and a brand-new career.

Like everyone else diagnosed with cancer, my life has suddenly imploded. I find myself in this new world, navigating how to continue while knowing the end is coming much sooner than I’d like.

That’s why I’ve sought out palliative care. My own research leads me to studies showing that having a palliative-care expert can help me prolong my quality of life through the management of symptoms, such as pain that I know will likely worsen over time. My family doctor concurs, telling me outright that I need this.

This new relationship has enabled me to talk about my greatest fears. After my conversation with my surgeon, I fear dying slowly of sepsis, waiting for my organs to fail. I’ve agreed to a Do Not Resuscitate order, which ensures I won’t be hooked up to machines in the ICU, prolonging The End.

During this particular admission to hospital and based on what my surgeon has said, my choices seem stark. Down the road, I could die slowly from an infection that will shut down my organs, or sign up for a medically assisted death.

Then, my palliative-care doctor arrives at my bedside. She points out I have bounced back from severe, acute episodes before. She also knows I don’t want an assisted death and takes the time to explain there are options available, such as palliative sedation, a process where I can have large doses of morphine to keep me comfortable. She firmly tells me I am not close to needing this. My goal needs to be focused on getting better and getting home, to my daughter.

As she explains this, I start to relax. She’s given me the window I need to live my life, as compromised as it now is. It is not the life I would have chosen, but it still has meaning. My task now is to figure out what that meaning is. And her task is to help me to define my priorities while maximizing the quality of my life with medical therapies and emotional support.

It’s an interesting time to be thinking of my life as a person who is both disabled and has cancer. Less than two years ago, the federal government enacted a new law enabling Canadians with incurable conditions, whose death is foreseeable and are suffering irremediably, to ask a doctor to end their lives.

It’s been called “dying in dignity,” but for me, that’s not the way I want to go, at the hands of a doctor, wielding a poisoned syringe.

I believe no one with a terminal illness should be forced to endure suffering – but, if there is one lesson for me in the past year, death is not the only way to alleviate suffering. Managing physical suffering feels like traveling a winding road. Some days, it feels never-ending; other days, manageable, almost like the life I had before. Some days are so bad, I’m convinced death really is the only relief, but I’m brought back to reality when I think of what I could miss out on.

My life is definitely smaller now. I doubt I will ever work full-time again. I barely leave my apartment. Thanks to my father’s financial generosity, my husband has been able to take unpaid leave from his work to be with me. The time we spend together is precious. Even in its ordinariness, it is meaningful.

I appreciate the world differently now. It is as though time has slowed for me to see the small details of life, whether it be the softness of my bed sheets or watching snow drift down through my apartment window.

I’m trying to live with dignity, as I always have, despite the very real medical indignities I have been subjected to.

Which is why it dismays me greatly there are continuing attempts to make it easier for people without terminal conditions to ask a doctor to end their life. It dismays me that a lobby organization calling itself Dying With Dignity is not actively lobbying for increased access to palliative and hospice care, or advocating for more community supports for people with disabilities to live as productively as possible. In other words, to live with dignity.

We are all going to die, but before we do, each one of us has a right to a good quality of life, even to the very end. Yet too many Canadians do not have adequate access to palliative and hospice care. The lobbying efforts of those to equalize this are rarely discussed in our media.

I’ve chosen my path, thanks to the help of empathetic doctors and my own advocacy. My hope now is that more Canadians have the right to do the same, without the implied suggestion there is only one real way to die with dignity.

Complete Article HERE!

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