Jul 15

Caregiving 101

Sharon Dardisby Sharon Dardis

Editor’s note: Hospice of the Red River Valley is fortunate to have wonderful guest bloggers contribute to our blog. This blog is written by Sharon Dardis, former Hospice of the Red River Valley employee, and republishing or reprinting any part of this article, The Caregiver Bill of Rights or Top 10 List is prohibited without prior written permission by the author, Sharon Dardis.

This story has a happy ending, and retelling it still feels like therapy. Four years ago, I was thrust into the role of caregiver for my husband who became suddenly, critically ill. I learned hard lessons about advocating and caregiving. Just a month short of retirement, and claiming he had no warning signs, Stan was struck with a serious bout of sepsis. He nearly died. Afterward, he said he thought his aches and pains were “pending retirement.” Since I’m a nurse, I felt somehow I’d failed him. I should have seen or suspected something. The next four months of my life as a caregiver began early in the morning of April 1, 2010, with a call to 911. When I called our kids later that day to say their dad was in ICU, our son asked, “April Fools, right, Mom?” 

Conscious Caregiver
As a nurse, I always thought I knew the ropes—navigating the maze of medical care with a loved one would be easier for me because of my experience. I seriously think it may have made the experience more difficult. Early on, a friend and fellow nurse suggested I keep a journal, recording not only my feelings but also information, names, lab results, appointments, who called, who said what, etc. It was good advice; it helped me to not feel completely out of control. (I still flip through it occasionally, reprocessing the experience.) But I think keeping a journal made the medical community nervous. There I sat, notebook in hand, pen poised as the latest specialist recounted the newest findings. It came in handy, and in several cases, was helpful, in Stan’s recovery (and my own mental stability). I also recorded my thoughts or things Stan said or did.

We were lucky. After three different hospitals, a second ambulance ride, scans, massive antibiotics, and finally, major surgery, I took Stan home to recover with another two months of IVs and therapy. He had experienced good care. His recovery complete, he dove into his “new life,” suffering no ill effects. Today, he’s healthy and, like me, very, very grateful. 

He remembers little of those intense four months. Only a month into it, he did attend his retirement party. Fiercely proud and not wanting to go unless he could “stand tall and be coherent,” (but still in significant pain) his doctor commented, “You want both?” We stood together that day, addressing his guests with a short talk titled, “Top10 Things We Would Have Rather Not Learned This Month.” He let me help him prepare these short remarks, which was very much unlike him. It was not how he had planned his retirement send off. We took turns presenting; it felt surreal. It took another two months before Stan was fully himself again. Like all caregivers, I believe I came away with some hard lessons learned. 

Caregiver Bill of Rights
After a particularly bad day, I left Stan’s hospital room in tears; actually, I was hysterical. I knew I was exhausted and worried, but I was also frustrated and sad, and writing helped express my concerns. I pounded out my own “Caregiver Bill of Rights,” taking into account some of the experiences I had as the “responsible caregiver.” Stan was my husband; I was his advocate. It never felt easy and rereading what I’d written later, it was pretty clear. This kind of caregiving was complicated.

I suspect if every caregiver on the planet wrote their own bill of rights for caregivers, there would be as many different versions as there are people. Since each caregiving situation is different and every person is up against a unique set of problems, there are a million ways to approach the topic of the self-care and preservation of those who provide care to loved ones.

Google “Bill of Rights for Caregivers,” and you’ll find many affirming approaches to this proposition. Jo Horne presents a helpful list of reasons to believe caring for ones’ self is “not an act of selfishness.” She reminds us that to survive, we need to first take care of ourselves. Not knowing her story, nor who she might have cared for, I read between the lines. She understands, I suspect from experience, that to stay a strong and effective caregiver, one needs to take good care of oneself.

I think many of these well-worded and carefully constructed “documents,” meant to help instruct and support others in the art of caregiving, are born of personal trials; hard-won, hands-on, days, weeks, months, years of attending to those who need us. It’s never an easy road.

Sherri Snelling, CEO of Caregiving Club and author of “A Cast of Caregivers” has another version, one that speaks not only to self-care and preservation but also beyond, to what to we should be able to expect from the health care team, employers, our family and friends, as well as public, private and even national resources. 

You’re Not Alone
I never dreamt I’d be in a situation that would prompt me to craft my own Caregiver Bill of Rights. I suppose it’s like writing a letter in a fit of passion; sometimes it’s better to wait before you send it out or maybe never send it at all, tear it up or bury it in some drawer. But in my case, my own Caregiver Bill of Rights was written just as I came to the end of my rope. Tears streaming down my face, I was forced to admit, even though I was a nurse, or maybe because I was, I felt powerless and exhausted. Once I pounded out my thoughts, took a breath and thought about it, it felt good. I felt better. I suspect I’m not alone. 

What follows is what I wished for as a caregiver; my own Caregiver Bill of Rights. Rereading it, I think what I wanted most was to be heard and acknowledged. I’ve left my version mostly unedited, as a reminder of that difficult time. Caregivers are fragile. A smile, a kind word goes a long way in helping ease what is often a long and difficult road. Three cheers for caregivers everywhere! 

Caregivers Bill of Rights: Regarding Clinic Visits, Home Care and Hospitalization of Loved Ones
By Sharon Dardis, May 2010

  • Within legal and confidentiality parameters, I have the right to act as an advocate for my loved one’s health care and medical treatments.
  • I have the right to ask questions on his/her behalf, to be with them during exams and cares and to take informed notes, including test results and procedures, to be a more effective, informed caregiver, without fear of intimidation from medical and/or support staff.
  • I have the right to clear explanations with understandable instructions, including homecare before discharge from the hospital setting.
  • I have the right to have caregiving questions answered promptly when I call the doctors and nurses.
  • I have the right to not be intimidated or put down for my advocacy role, by gatekeepers for the doctors, nurses, nursing assistants, clinic appointment staff or other medical personal.
  • As the primary caregiver for my loved one, I have the right to respect, and even compassion, from all medical staff and personnel, including non-medical personnel.
  • I have the right to expect courteous and kind attention from all health care workers as I advocate for my ill loved one. I have the right to expect the best medical care available for my loved one. I have the right to request second opinions or transfers if the care for my loved one seems inadequate or substandard.
  • I have the right to be with my loved one as long as it doesn’t impede the tasks of those caring for him or her.
  • In so much as caregiving demands both physical and emotional energy, I have the right to a championing of my role from medical personnel, to empower me and my cares, rather than being given an impression I am somehow intruding or in the way.
  • I have a right to wear a big button that says, “I am a CAREGIVER! Caregiving Counts!” to remind people of the important role I play in my loved one’s recovery. (The downside of this is that, really, every one of us is a caregiver in one way or another. We should all be wearing “treat me kindly” buttons!)

Sharon Dardis, RN, BSN, is a former Hospice of the Red River Valley employee. Beginning as a volunteer, she later became a hospice staff nurse and bereavement specialist. Sharon developed and facilitated “Kids Grieve, Too,” for Hospice, a support and educational program for young people experiencing the death of a loved one. Moving to the Twin Cities in 1993, she helped develop and coordinate “Kids In Grief” another children’s grief support group in Stillwater, Minn. Now retired, Sharon is a board member of the Minnesota Coalition for Death Education and Support and also edits their quarterly newsletter, “Coalition News.” In 2000, Sharon coauthored and published, “As I Journey On: Meditations for Those Facing Death.” The proud mother of three and grandmother of eight, Sharon spends her time with husband, Stan, in St. Paul, Minn., and Alpine, Wyo.

Editor’s note: Republishing or reprinting any part of this article, The Caregiver Bill of Rights or Top 10 List is prohibited without prior written permission by the author, Sharon Dardis.


Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/07/15/caregiving-101/

Jun 30

A Brit with a Big Heart: One Volunteer’s Experience with Hospice

Hazel MeidlingerMore than 4,000 miles away and 50 years ago, while growing up in Leicester, England, Hazel Meidlinger couldn’t have imagined the significant role Hospice would play in her life. She was familiar with the concept of hospice care because of its English roots, a movement started by Dame Cicely Saunders in 1948. “I heartily believed in hospice long before it was started in America because I recognized the importance of that type of care at the end of life,” Hazel explained. “I’m very much in-tune with it.” But as she busied herself with establishing a family, Hazel didn’t think much about hospice until many years later when a volunteer opportunity arose.

A Family Formed
While still in England, Hazel met the love of her life, Harold, while he was stationed there for the U.S. Air Force. Soon after they met, the couple married and welcomed the first of four children into their family. In 1955, Harold completed his service in the Air Force, and the Meidlinger family transplanted to America, making Council Bluffs, Iowa, their first home abroad. In the early 70s, the family, which had increased by three more girls, moved to Fargo, N.D., for Harold’s work, and Hazel continued to be a stay-at-home “mum”—raising their children.

Right Place, Right Time
It wasn’t until after their girls were grown that Hazel sought to continue volunteering as she did in Iowa. “Back in Iowa, I was somewhat involved in animal rescue, and I enjoyed that experience, and I wanted to do something here after the girls were gone from the house,” Hazel said. Her good works began at Dakota Hospital where she helped run the gift shop, and she said the experience was “just delightful.”

While working at the hospital, Hazel met two individuals who were instrumental in getting her involved with Heirlooms, an upscale resale store benefitting Hospice of the Red River Valley (HRRV). “I thought the whole concept of Heirlooms was just really neat,” Hazel explained. “Hospice was just getting the store started, and after listening to a presentation about the story of Hospice of the Red River Valley and their idea for Heirlooms, I just knew I had to help.”

Since the store’s inception in 2003, an upbeat, merry Hazel has greeted Heirlooms patrons at the front counter on Saturday afternoons, and even in her 80s, she wouldn’t have it any other way. “I look forward to my volunteering there, and I’ve never even thought about stopping,” she said. “I’m going to continue volunteering at Heirlooms as long as they’ll have me.”

Staffed by more than 70 volunteers, Heirlooms isn’t just a place of business to Hazel, but rather it’s a place with a wonderful atmosphere where she considers everyone as friends. She frequently sees familiar faces from the community. “I love the people there—both volunteers and shoppers, and I don’t consider what I do work because it’s such a pleasure,” Hazel described. “The other volunteers and the management staff are just wonderful.”

Something More
In early 2014, Hazel’s experience with Hospice of the Red River Valley deepened when her husband, Harold, began receiving care. For many years prior, Hazel looked after her husband who suffered from dementia, and when it was time for Hospice, Hazel welcomed the help. “I didn’t feel like the world was on my shoulders anymore; I didn’t feel alone,” she explained. “Even though my husband wasn’t on hospice care for very long, the Hospice staff was a great comfort and help to me and my family.” Hazel described his primary Hospice registered nurse as “kindness herself” and added the staff was always “very concerned with her husband’s care.”

Shortly after Harold began hospice care, he passed away, but Hazel remains grateful for the cares he received. “Now that I’ve seen the way Hospice helped our family, it’s all the more reason for me to continue supporting the organization,” she said. “I saw firsthand the kind of care people are receiving, and it’s so important because we’re all going to be there one day. I totally believe in Hospice.”

As the days go by and Hazel’s journey continues, she looks forward to the weekends when she works at Heirlooms. Smiling, Hazel added, “I feel great when I’m there and knowing that my work helps support such a wonderful organization that has given so much to others.”

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/06/30/a-brit-with-a-big-heart-one-volunteers-experience-with-hospice/

Jun 17

Join us on July 1 for the 2nd Annual Go Hawaiian for Hospice Luau Lunch

Go Hawaiian for Hospice 2014Choice Financial invites the community to the second annual “Go Hawaiian for Hospice” luau lunch!Go Hawiian for Hospice young girl

When: Tuesday, July 1 from 11 a.m. – 1:30 p.m.

Where: Choice Financial, 4501 23rd Ave. S., Fargo

For a suggested donation of $5, attendees will feast on a pig roast, French fries, fresh pineapple, Hawaiian punch and a frozen treat. In addition to delicious food, we’ll also have live music, raffle prizes, games, a memorial wall where you can remember a loved one and more! Make a donation of $25 or more, and Aartisan Fine Furniture Distinct Design will give you a $25 Maxwells gift certificate. All proceeds will directly benefit Hospice of the Red River Valley’s mission to provide comfort at the end of life’s journey.

Go Hawaiian for Hospice event organizers


Go Hawaiian for Hospice was founded in 2013 by Erv Inniger of Choice Financial. After witnessing firsthand the fundamental care provided by Hospice of the Red River Valley (HRRV) for a close friend, Norene Bunker, Erv was inspired to create a fundraising event. Erv, and a Choice Financial bank customer who had also experienced hospice care for several family members, rallied a team, and Go Hawaiian was created.


 Go Hawaiian for Hospice event volunteers

In its inaugural year, Go Hawaiian for Hospice event planners hoped to raise $10,000—the event surpassed all expectations and raised $20,000. The 2014 event fundraising goal is $30,000.

Please join us on Tuesday, July 1 at Choice Financial in Fargo for Go Hawaiian for Hospice!

Click to purchase an event ticket in advance, or visit the Go Hawaiian for Hospice Facebook event page.

Event Sponsors:










Special thanks to:
Master Construction, United Rentals, Nine Dragons, Comfort King, HOM Furniture, Mike Dragosavich of Spotlight Media, Paul Bougie of Spotlight Media, Indigo Signworks, the Fargo Fire Department, Corwin Automotive Group and Jim Elliot.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/06/17/join-us-on-july-1-for-the-2nd-annual-go-hawaiian-for-hospice-luau-lunch/

Jun 03

Hospice Care: Creating Cherished Moments for Patients & Families

Hospice Care: Creating Cherished Moments for Patients and FamiliesIn May, the National Hospice and Palliative Care Organization (NHPCO) launched a new national campaign, “Moments of Life: Made Possible by Hospice,” aimed at educating those who are unfamiliar with the benefits of hospice care. The campaign focuses on sharing patient and family life moments made possible by hospices throughout the country.

Hospice of Red River Valley is thrilled this new campaign garners national attention and shares the news that hospice care provides opportunities to live a fuller and richer life to the end. With the assistance of our professional staff and dedicated volunteers, those under our care can focus on experiencing life’s moments, such as spending precious time with their families and fulfilling life-long dreams.

We share these stories through our website and this blog. We encourage you to read the stories and contact us to share your story—how you help create life moments for those receiving hospice care.

Learn more about the Moments of Life: Made Possible by Hospice campaign below in a public service announcement (PSA) and press release issued by the NHPCO.

NHPCO Launches New Moments of Life Campaign

Patients’ and families’ stories show hospice is about more than death – it’s about life

Alexandria, Va.—May 16, 2014—In celebrating the 40th anniversary of hospice care in the United States, the National Hospice and Palliative Care Organization is excited to introduce a new national campaign, “Moments of Life: Made Possible by Hospice,” that will show all Americans that hospice focuses on living and enables special moments and memories at the end of a life for patients and loved ones.

A father’s final wedding dance with his daughter; an afternoon concert with family and friends; the opportunity to bring an infant daughter home; an afternoon tea party with grandchildren… these are only some of the moments made possible by hospice.

The Moments of Life awareness campaign will feature stories gathered by hospices across the country of patients and families experiencing hospice care first hand. The stories will take the form of videos, photos, audio recordings and text and will offer a vibrant cross-section of different perspectives of hospice.

“In this campaign, we are looking for real stories that show patients’ abilities to ‘do more’ as a result of their experience on hospice,” said Anita Brikman, senior vice president of communications for NHPCO. “No matter what format is used, these stories should show America that even when you’re dying, there is still a lot of living to do.”

For many who have not seen hospice in action, it has become a common misconception that hospice patients are merely lying in bed, waiting for their end to come. For families who have experienced hospice, they see the focus is not on dying—it is about living as fully as possible. Hospice not only provides the highest quality care, it affords more moments, memories and opportunities.

“With the Moments of Life campaign, NHPCO is working with the entire hospice community to show that hospice helps patients obtain the end-of-life care they prefer at home, free of pain, surrounded by loved ones,” said J. Donald Schumacher, NHPCO president and CEO.

For more information, visit the new Moments of Life microsite at MomentsOfLife.org.

Anita Brikman
NHPCO Senior Vice President, Strategic Communications
Ph: 703-837-3154


Take Our Survey!
In an effort to better gauge our community’s understanding of hospice care, we created a survey. Participation is anonymous and should take less than 5 minutes. Thank you in advance for your participation! Click here to begin.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/06/03/hospice-care-creating-cherished-moments-for-patients-families/

May 20

Heart to Heart: Hospice Staff a Precious Aid to a Patient

Caroline and JenniferMark Twain once said, “Praise is well, compliment is well, but affection—that is the last and final and most precious reward that any man can win, whether by character or achievement.” Certified Nursing Assistant (CNA) Jenny, at Hospice of the Red River Valley, has earned that ultimate prize—affection—from our patient, Caroline.

At age 89, Caroline was accustomed to taking care of things herself or with the help of her husband, who recently passed away. In October 2013, Caroline began receiving hospice care, and ever since then, she’s received not only exceptional care through Jenny, but has also found a friend. “I call her my Jenny,” Caroline explained. “She has a real spark of life in her. She has a full plate besides me, but you wouldn’t know it when she’s taking care of me.”

Jenny provides Caroline with basic cares, such as bathing and hair washing, but she also is careful to leave a little time for special things like painting Caroline’s nails or chatting over a cup of coffee. “It’s the extra small things that add up for someone,” Jenny said. “I so enjoy the time I spend with Caroline.” Jenny has worked as a CNA with Hospice of the Red River Valley for five years and has formed a real bond with pleasant, easygoing Caroline. “Patients like Caroline make my work so much easier,” Jenny explained.

Anyone who has spent a little time with Caroline and Jenny together can see it—the undeniable connection the two share, building such a rapport with one another, it’s like they’ve known each other for years.“I have up and down days, but she’s given me such wonderful help,” Caroline said. “Jenny’s my right arm, and I couldn’t survive without her.”

The cares Jenny provides are precious to Caroline, just as the entire hospice experience has been for her. Caroline said hospice care is more than she expected. “Hospice takes a real interest in you,” she described. “I’ve had people just stop in on their way to visit someone else, and I think it’s so nice Hospice takes the time to do that. You know you’re in good hands,” Caroline said.

In addition to “her” Jenny’s help, Caroline’s oldest son, David, also provides support. “He usually has coffee and a sandwich out for me,” Caroline said. “He’s helped me so much.” David is one of four children—three sons and one daughter—Caroline raised in the house she and David now reside in.

“I just love it when my Jenny comes to visit,” Caroline said with a smile. “She’s the best, and I look forward to it.”

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/05/20/heart-to-heart-hospice-staff-a-precious-aid-to-a-patient/

May 06

When’s the Right Time to Ask about Hospice?

Roxanne SmedsrudBy Roxanne Smedsrud, RN, CHPN

It’s a Common Situation
One afternoon I was visiting with my friend, Valerie, and she began telling me about her grandpa, George, who was recently diagnosed with colon cancer at age 94. He lived in a nursing home in Fargo, but the last year found him in and out of the hospital on several occasions. Valerie talked about the toll hospital stays and moving from place to place took on George. Her mom was also exhausted from taking him to continuous doctor appointments and tests.

With a feeling helplessness in her voice, Valerie said she didn’t know what she could do to make the situation better for either of them. I asked her if anyone talked with her or her family about hospice, and Valerie said she often wondered about hospice, but since hospital and nursing home staff never broached the subject, she thought her grandpa wasn’t quite ready.

You’re Not Alone
As I listened, I couldn’t help but think of how many other families might be struggling with the same issues related to the decline of a loved one. The same people, like Valerie, who were waiting for a doctor or nurse to start the discussion about hospice.

Valerie expressed her hesitation with being the person to start the hospice conversation in her family. Would her family think she was giving up on grandpa? As for Valerie, she didn’t want to give up, but she also didn’t know the next step.

I gently explained to her that hospice care does not mean you’re giving up, rather, it means comfort and quality of life for a loved one by allowing the person to live their last days in their home—wherever that may be—surrounded by their loved ones and caregivers.

A Change of Heart
After our conversation, Valerie talked with her mom and the rest of the family about hospice care for George. Everyone agreed they wanted to learn more about hospice services, and the next morning a hospice nurse met with Valerie and her mom at the nursing home. Later in the day, Hospice of the Red River Valley admitted George to receive hospice care.

He was only on service for slightly more than two weeks when he died peacefully and comfortably, surrounded by his family. Even though he only received hospice care for a few days, it was easy to see the benefit Hospice provided, not only to George, but also to his family. Imagine the additional cares George could have received if Hospice was involved for the last six months of his life, instead of the just final weeks.

The family felt such a sense of relief that their beloved George didn’t have to spend anymore time in the hospital. Hospice, in collaboration with the nursing home staff, provided everything George needed at the nursing home, making the experience smoother for both George and his family. The combination of nursing home long-term care experts and Hospice of the Red River Valley end-of-life care experts meant George received high-quality comfort care while he spent his last days with his loved ones at his side.

Looking Back
I didn’t see Valerie until a couple of months after her grandpa’s funeral. When we did connect, she expressed her thankfulness for all the wonderful care her grandpa received from Hospice of the Red River Valley. Her only regret was not unlike what we hear from so many of our patients’ families … “I wish we would have known about Hospice sooner so we could have taken full advantage of the care and support they offer.”

If You’re Not Sure, Ask
So, when someone asks me, “When is the best time to ask about hospice?” I say, the sooner the better. Our staff visits with families at any time, free of charge and obligation—even if you’re unsure it’s the right time for hospice care for you or your loved one. You might be surprised by the piece of mind an upfront conversation about end-of-life wishes can offer, not just for the patient but also for the patient’s loved ones. If you have questions about hospice care, reach out to Hospice of the Red River Valley or ask your doctor. Understanding the options will allow you to make the best informed decision about your or your loved one’s end-of-life care.

Editor’s note: Names have been changed in the story to respect privacy.

Roxanne Smedsrud is a clinical education specialist at Hospice of the Red River Valley.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/05/06/whens-the-right-time-to-ask-about-hospice/

Apr 22

It Takes All Kinds: An Unexpected Hospice Volunteer

Steve SmedshammerVibrant, colorful tattoos cover Steve Smedshammer’s arms. Oversized, exaggerated earrings stretch his earlobes. A scratchy beard covers his face. By appearance alone, some might label Steve a hipster, or alternative. Few might be surprised to learn he plays guitar in a metal band. But, Steve is so much more than what meets the eye.

You don’t know by looking that Stevo, as he prefers to be called, is a recent pre-med graduate of Concordia College. At age 30, he and his new bride are expecting their first child. Between attending school, working full-time and playing in two bands, he also regularly volunteers his time at local non-profit organizations, including Hospice of the Red River Valley.

“It’s not something I advertise,” Stevo said, humbly. “And, it’s not something I do just to put on my resume.” He believes by getting involved, and having well-rounded experiences, the “payouts” are exponential.

Stevo was introduced to Hospice of the Red River Valley while attending Concordia College. There, in his Biomedical Ethics class, a speaker from Hospice addressed the class. “I thought, to be a volunteer, you had to have certain prerequisites or medical background,” Stevo shared. “When I learned I could join an organization and immediately make a contribution, I was sold. I knew that same day I would apply as a volunteer.”

While some people are intimidated by the idea of being a hospice volunteer, Stevo quickly relaxed into the role. He made an instant connection with his first patient, Joe*. They bonded through a shared love of music and spend their visits listening to Johnny Cash, Patsy Cline and “Americana” style music. “Joe asked me to sing to him once, but after years of scream-singing in a metal band, he hasn’t asked again,” Stevo said with a laugh.

As a musician who plays 16 instruments, including guitar, accordion, ukulele, cello, melodica and more, Stevo was the just person to help Joe achieve his goal of learning how to play guitar before he died. And so they began lessons. When the guitar became too much for Joe to handle, they switched to ukulele.

“Joe almost nailed a three minute song. It was so rewarding to see him pull it off,” Stevo described with a smile, recalling a favorite moment with his new friend. “He’s normally pretty self-deprecating, but after that song, he actually complimented himself. That was a proud moment for both of us. We celebrated with a high-five.”

Whether strumming his guitar and chatting, or sitting at a bedside during a Pathway visit, Stevo is a natural.

“When we received Stevo’s application and spoke with him, it was obvious to us that he has a wonderful, giving spirit,” Deb Kluck, manager of clinical development – volunteer services, said. “Stevo is not our ‘typical’ volunteer, and we’re thrilled about that. We need all types of people to help make our patients’ end-of-life experiences fulfilling. Variety is the spice of life, even at the end of life.”

“Most people think they could never be a hospice volunteer. I think if more people gave it a try, they’d be surprised,” Stevo explained. “If you enjoy talking with your grandpa, grandma, parents, aunts or uncles, having a conversation, just being present with people, you can be a hospice volunteer. It’s not bleak; it’s actually an overwhelmingly positive experience.”

Being a hospice volunteer has given Stevo a new perspective on life and an enhanced appreciation for his health. Volunteering with Hospice has also taught him a lot about time. “Sometimes you just need to be still, sit down and savor the quiet moments,” he explained. “People don’t just sit anymore.”

For Stevo, the rush of helping someone else is addictive. He recalls, his grandmother was cared for by Hospice, and he remembers her nurse as “the lighthouse in the storm.”

“Sometimes, just knowing someone else cares, outside of the family, can be comforting,” Stevo said. “I can do that.”

*Please note: The patient’s name has been changed to protect his privacy.

At Hospice of the Red River Valley, we are fortunate to have many dedicated volunteers. We celebrate their contributions to the organization. Click to find out more information about our volunteer program and how to apply.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/04/22/it-takes-all-kinds-an-unexpected-hospice-volunteer/

Apr 08

A Child’s Understanding of Death & Grief: Age Matters

By Kriston Wenzel, LSW

From the very moment we enter this world, we are exposed to new people, things and experiences. Life is new—every day. And for most of us, when life is lost, that’s new too. No matter the age, the loss can evoke feelings of sadness, helplessness and even anger. But for children in particular, the loss of a loved one can be scary and confusing because—depending on their age—children may not understand the concept of death, or they may be unable to recognize what they are feeling so they can work through their grief.

Children and teens understand loss differently than adults, and it’s important to recognize how the individual’s age contributes to their grief reactions. Distinguishing the difference age plays in how a child may behave can help you be more prepared when consoling a child. Some cues are verbal, but nonverbal indicators exist as well.

If you know a young person who is recently bereaved, be mindful of typical understandings based on the age of the child:

Up to 3 years of age:

  • Senses feelings of adults.
  • Depends on nonverbal communication for care, affection and reassurance.

3 to 6 years of age:

  • Magical thinking is characteristic, with the child believing in the power of his/her wishes.
  • Common to consider death as retribution for bad thoughts or deeds.

6 to 10 years of age:

  • Gradually accommodating himself/herself to the ideal that death is final, inevitable, universal and personal. A full understanding of the characteristics of death does not come until a later period.
  • Expresses feelings through behavior and physical reactions.

10 to 12 years of age:

  • Learning to understand both the biological and emotional aspect of death. Focuses is on the biological facts, as they now have a frame of reference for them.
  • Beyond wondering what death is, and caught up in relational and practical concerns.


  • Adult-like understanding of performance of death and realization that everyone will die.
  • May assume roles of the person who has passed.

Although the above understandings and behaviors are just samples of how children deal with grief, we hope this gives you a base understanding of how signs of grief vary depending on the age of the child. During this time, information and resources can be incredibly helpful to not only the child, but also you.

Hospice of the Red River Valley offers Youth Journeys on Saturday, April 12—a daylong workshop for youth ages 6-18 who have experienced the death of a loved one. For more information about Youth Journeys, or to register, contact us at (800) 237-4629 or email questions@hrrv.org. Pre-registration is required by Thursday, April 10. Youth Journeys is one of many grief-related offerings that Hospice of the Red River Valley provides to our communities.

In addition to this workshop, we also have support groups and classes, a grief resource library and an annual conference. No one should have to suffer through grief alone. If you or someone you know could benefit from grief support and resources, please contact us.

Kriston Wenzel, LSW, is a bereavement specialist at Hospice of the Red River Valley. What she enjoys most about her work is having the chance to help individuals and families find their strength and resiliency during such a difficult time in their lives.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/04/08/a-childs-understanding-of-death-grief-age-matters/

Mar 25

A Dream Comes True for a Hospice Patient


A Dream Comes True for a Hospice Patient

Sonny with his daughter, Pam

Sweet Surprise
On a rural farm in Ulen, Minn., a long-sought-after dream came true for Sonny, Hospice of the Red River Valley patient, when he received a phone call from Nashville, Tenn. On the other end of the telephone Sonny heard the voice of his favorite country music singer, Bill Anderson (also known as “Whispering Bill”). “My family kept saying the call was going to happen, but I just couldn’t believe it,” Sonny said. “Pretty soon, there was a call, and I heard, ‘Telephone, Dad, telephone!’ I knew something was cookin’.” Sonny and Bill discussed the weather, life and Bill’s music—making Wednesday, March 5, 2014, a memorable day for Sonny.“I like music, and I used to play a jukebox, but I didn’t pay attention to the artists at the time,” Sonny explained. “It wasn’t until after I retired that I began to notice Bill was singing the songs I really enjoyed.” Sonny found a new hobby in not only listening to Bill’s music, but also in taping weekly episodes of the Country Family Reunion show, hosted by Bill. “I have 52 videos in my collection so far,” Sonny said. He also enjoys singing along to some of Bill’s classic tunes like, Bright Lights and Country Music.

Making the Dream Happen
In December 2013, Sonny began receiving care from Hospice of the Red River Valley in his rural home. His daughter, Pam, wanted to connect him to an organization like Make a Wish® with the hope her dad could one day meet Bill.

“I got to thinking, there must be a place with the ability to help adults who are at end of life,” Pam said. Through an online search, she located the Dream Foundation in Santa Barbara, Calif. The Foundation’s mission focuses on enhancing the quality of life for individuals and their families who face a life-threatening illness by fulfilling a heart’s final wish.

“I contacted the Dream Foundation, and they had an application specifically for hospice patients,” Pam explained. With the assistance of Hospice of the Red River Valley staff, the application was completed and submitted to the Foundation. “Hospice really helped us connect to the Dream Foundation and answer any questions the Foundation had about Dad,” she said.

Because of Sonny’s current prognosis, the application was promptly forwarded to the “emergency dream team” and placed at the top of the Dream Foundation’s wish list. Given Bill’s schedule, a phone call was arranged instead of an in-person meeting.

“All of a sudden, it just happened, and Bill was on the phone,” Pam described with excitement. “Hearing Dad talk with Bill was a beautiful thing.”

The Cherry on Top
Following the “dream” call, the Dream Foundation sent a CD from Bill, and Bill sent Sonny a package containing single-song DVDs and other artist memorabilia. “Bill had already sent me an autographed picture, but I’m happy to add the extra things to my collection,” Sonny said. “I couldn’t believe I actually got to talk to Bill. It was a once-in-a-lifetime experience.”

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/03/25/a-dream-comes-true-for-a-hospice-patient/

Mar 12

Clearing the Air: Differences Between Palliative Care vs. Hospice Care Explained

By Judy Peterson, LSW

Defining the Difference
The distinction between palliative care and hospice care can be confusing when deciding the next best course of action when you or a loved one is faced with a serious illness. Although both care plans have similar comprehensive, multidisciplinary team approaches—focusing on holistic care for the entire person—including medical, emotional and spiritual needs, they have key differentiating factors. The main differences include the patient’s prognosis, disease progression and desires for curative treatments.

Hospice care is palliative care, but not all palliative care is hospice care. Palliative care is a type of specialty medicine focusing on pain and symptom management, and hospice care is a subset of that type of care. Think of it in these terms: a dentist is a doctor with an area of expertise—dentistry—but not all doctors are dentists. Dentists simply fit under the umbrella of medicine with particular area of focus.

Palliative Care
Palliative care services are appropriate for any patient, no matter the patient’s diagnosis or disease progression. Individuals with chronic or serious illnesses, those receiving aggressive, curative care and those nearing the end of their lives, are all candidates for palliative medicine. Many times, palliative treatments are used to alleviate side affects of aggressive treatments like those associated with chemotherapy. The patient can work toward curative treatments while receiving palliative treatments and may even one day fully recover from their illness.

Hospice Care
Hospice care, on the other hand, is for those who have a life-limiting illness with a diagnosis of six months or less to live if their illness follows its normal course, according to the patient’s physician and a hospice physician. Although the initial prognosis for a patient must be six months or less to live, it does not mean the patient will be discharged if they live beyond that time frame.

The foundation of hospice care is to provide comfort and symptom management through high-quality care at the end of one’s life. The focus of care shifts from aggressive to comfort care for the patient through the use of medication to keep the patient comfortable when hospice services are started. Where the care takes place is also distinctive to hospice. Services are provided wherever the individual calls home, such as a private residence, nursing home, assisted living facility, veterans’ facility or hospital.

Under the Hospice Medicare benefit, care includes access to hospice services 24-hours a day, seven days a week. Pharmaceuticals and medical equipment are also available under the benefit. Another unique aspect of hospice is grief support for family members up to 13 months after their loved one passes.

It’s a Choice
If you thought you had a year to live, would you live your days differently than if you were told you only had a week to live? Currently, the focus has shifted to the use of palliative medicine vs. hospice care for end-of-life care. Typically, this shift has not allowed people to make a timely and educated decision on how they wish to proceed with their end-of-life care.

Would you choose to undergo multiple tests, poking and prodding in an effort to give yourself maybe one more day or week? Because an individual can continue receiving aggressive treatments while receiving palliative-type services, that person may be subject to unwanted or unnecessary testing and treatments if they are not given all care plan options, including hospice. Shifting the focus to hospice care is a difficult decision for many patients and their families, but what most people don’t realize is that most palliative care triggers used to identify the right time to talk about palliative medicine are very similar triggers to what hospice uses when evaluating a patient for appropriateness of admission to hospice care. Ultimately, it’s up to the patient and the course they would like to chart through their journey.

I’m often reminded of a patient, we’ll call him John; we had on service at Hospice. John grew up in an era where you always did what the doctor recommended—even if that meant you should consider additional testing, procedures or a trip to see a medical specialist many miles away. He wanted to live, and he had so much to live for, including a beautiful family, loving and caring wife and his precious farm. Regardless of his will to live, his illness took a toll, and his condition wasn’t improving.

John endured every test, surgery and curative treatment conceivable. It wasn’t until he had only a few days left to live that he was given the option of palliative care and hospice, changing the direction of his care plan. His final month of life was spent in the hospital, undergoing an additional surgery just two weeks before he passed. John already had a weak heart, bad liver and failing kidneys. With his kidney complications, it was recommended that he should proceed with dialysis. John’s heart could not tolerate the treatment, so it was stopped partially through the first run.

He wanted to spend his final days at his beloved farm, but rather than offering comfort medication to allow him to remain in his home and be comfortable, John ended up weak, deconditioned and unable to return home. His last days were spent in a nursing home with hospice care on board, and John finally received care to keep him comfortable. He did have a few good days at the nursing home, and he was able to enjoy his family, laugh about good times and ride his scooter outdoors to soak up some sunshine. I wonder how his final days would have played out had he been involved in palliative care/hospice care sooner. Unfortunately, we will never know.

What’s right for you or your loved one?
Palliative care should be implemented early in the disease process as aggressive therapies remain in place. The use of palliative medicine should increase as the disease process advances, and this will allow the patient to advance to a level of care like hospice, continuing with comfort care. Hospice services enhance an established care plan by offering additional pain and symptom management, spiritual care and bereavement support. As the patient approaches end of life, hospice can be there to help with final goodbyes—both for the patient and their family. This time is not only important for the patient, but it is also essential for the family.

Palliative care and hospice care are valid treatment plan options. It’s true that aggressive treatment choices will always be there—there will always be the next test or surgery—but the benefits vs. difficulties for the patient and family should be considered. When appropriate implementation of palliative medicine is used, it can offer the patient an opportunity to choose the care that most closely aligns with their end-of-life wishes and personal values.

Judy Peterson is a manager of clinical development at Hospice of the Red River Valley.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/03/12/clearing-the-air-differences-between-palliative-care-vs-hospice-care-explained/

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