Apr 21

How to Know if You’re a Caregiver: Signs to Recognize in Yourself and Others

Sharon DardisBy Sharon Dardis

If you’re a Scrabble player, perhaps you already know there are 144 possible word combinations contained in the word “caregiver.” Likewise, there are probably as many situations in which someone might be involved in a setting that would consider them a “caregiver.” How do you know if you’re one of them?

The Accidental Caregiver
My mother could have been labeled an “accidental caregiver.” She married my jitter-bugging, music-loving father in 1942, neither one of them knowing what the future held for them in terms of health challenges. My supposedly “hale and hearty” father, in his early 20s, had tried to enlist in the Army before he and mother married, but he was classified as 4-F (indicating he was medically unfit for service) because of a heart murmur. The story goes that he took the Army’s form stamped “4-F” at the induction center and put it on “the bottom of the paper piles” and tried going through the enlistment line again. They rejected him and sent him home. He was heartbroken. He had sold all his worldly belongings, even his guitar, thinking he was “off to the war!” He and my mother married shortly after, and seeking work, they took the Northern Pacific train, west to Seattle. My sister and I were born within the next six years. Only a couple years later, dad started having mini-strokes, associated with the untreated rheumatic fever he had as a kid. His mitral value, which lies between the left atrium and the left ventricle, had narrowed, his circulation was compromised and he was, for his remaining life, chronically and seriously ill. Slowly but surely, throughout the course of my childhood, my dad’s health deteriorated. My mother’s life as a caregiver, without fanfare or acknowledgement, had officially begun.

Continuous Caretaking
The term “caregiver” wasn’t officially used until around 1966. Before then, it was called “caretaking,” or as in our family’s case, was not even labeled or discussed. Mom worked full-time. Dad worked when he could. Mother took care of him, and somehow, we survived—quite happily, in fact. In 1956, my father traveled to the Twin Cities to become one of the first patients ever at the University of Minnesota Hospital to have major open heart surgery; a mitral heart value repair was done using the new (Think Medtronic!) heart-lung bypass machine. The surgery was a success and my father lived another five years, with a fairly good quality of life. I was 14 when he died.

Through it all, mother was the one who took care of him, my older sister and me. There was no label for what she was doing, nor did she point out specifically what it was she actually did. After my father died, in 1964, my mother, sister and I carried on. At age 42, five years following her widowhood, my mom married again. Her new life was amazing—a miracle—until, 10 years into that marriage, when my strapping, handsome and successful stepfather suddenly developed a rare neurological disease called spasmotic torticollis. And once again, accidentally, my mother assumed the role of caregiver. She never wavered, until the tables turned.

Although my stepfather struggled with his disease, he and my mom carried on with a fairly normal life until my mother was diagnosed with Alzheimer’s at age 70. Always an independent and proud woman, she was quite understandably devastated. Yet, she continued to care for my stepfather, taking him to neurological appointments, keeping his medical records and being his advocate. She was a fierce and tireless caregiver.

The Advocate
The Thanksgiving after her diagnosis, they traveled from Kansas to spend the holiday in Minnesota with us. My stepdad was exhausted and frantic, trying to map out the future with my mother, who was increasingly losing her grasp on reality. He and I had several brief opportunities that holiday weekend to talk alone, and in the end, I jotted down ideas on a notepad for him regarding my mom’s care to discuss with their doctor once they got back home. It was all good, knowing at least, that somehow I was helping. The long-distance caregiving, for me, as a daughter, was difficult. It was hard to stay engaged with mom’s care while having little say in the actual decision making. Giving my stepdad advice seemed helpful at the time, until my mom discovered the notes in his shirt pocket while she was doing his laundry after they got back home.

A few days after Thanksgiving, our phone rang late. I was already asleep. I answered the phone groggily and heard my mom’s voice, usually tender and loving with me—never confronting, now shrieking, saying I that had betrayed her trust. It took me a minute to even realize who this caller was. “Mom?” She sounded that foreign to me. “I’m the caregiver, Sharon!” she scolded, repeating this over and over again. “I’ll do the caregiving. I’ll do the caregiving here!” I cried myself to sleep. But mother had made her point.

Turning the Tables
So, who are the caregivers? How do we know when the tables have turned? And why is it important for us to even care? How can it make a difference in our experiences of caring for loved ones? Maybe it’s the importance of knowing the enemy, or identifying the diagnosis. If you can’t name it, you can’t treat it or fight it. Recognizing yourself as a caregiver, and then articulating what you need as a caregiver, is also a big step in the right direction.

In my mother’s case, although she had been diagnosed with dementia, she was remarkably able to continue to convince my stepdad that she was still in control. And in fact, she still did a pretty good job of caring for him. This was not always a good thing but because he was her husband and loved her unconditionally, he allowed her to call many of the shots. Trust me, there were a lot of “crisis management” moments for us as a family in those years. I’ve decided the only thing worse than being a caregiver in a situation like this is not being able to be the primary caregiver. As a daughter without a say in the final care of my mother, I suffered. We all did. And in the end, my mother, a caregiver to the end, had a major stroke and died knowing she’d done the best she could and more. Caregivers do the best they can with what they have to work with, and as is often the case, things don’t always happen as we have planned. Often accidental caregiving and uncertain outcomes ensue.

Am I a Caregiver?
So how do you know if you’re a caregiver? Last November, Comedian Jeff Foxworthy and caregiver/author Peter Rosenberger got together for National Caregivers’ Month and made light of this on a recent AARP website: https://www.youtube.com/watch?v=WJUyfrsJDCY “You know you’re a caregiver if you know your parents social security number but don’t know your own.” Or, “You know you’re a caregiving if you can open a heavy glass door with your butt while pushing a loved one’s wheelchair.” Humor helps. But realistically, if you take a loved one regularly to the doctor, or buy their groceries, or have a sibling with special needs whom you support, advocate for an ill spouse, or engage in long-distance care of a loved one, you are a caregiver. The important thing to recognize is that your caring role is important. What you do matters and to do it well, you need to name it. “I am the caregiver. I’ll do the caregiving here.” Step up. Name it, then care for your loved ones but also remember to care for the caregiver, too. Be able to recognize your own needs. And whether accidental, recognized or one of many or few, God bless caregivers and their loved ones, everywhere!

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.

About Hospice of the Red River Valley
Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email questions@hrrv.org or visit www.hrrv.org.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2015/04/21/how-to-know-if-youre-a-caregiver-signs-to-recognize-in-yourself-and-others/

Apr 14

Good Deeds and Fellowship: Hospice Volunteer Aims to Make a Difference

Matt MastrudThe year 2014 proved to be a year full of changes and personal transformation for Matt Mastrud, a Hospice of the Red River Valley volunteer. About seven months ago, Matt set two very deliberate goals: get into better shape by starting a Brazilian Jujitsu class and share his time with others by volunteering.

He knew right away he wanted to volunteer with Hospice because his mom received hospice care when she was dying of breast cancer and he remembered being impressed with the care. Giving his time back to hospice seemed like a natural fit.

“I’m trying to do some good stuff in my life,” Matt explained. “I knew if I volunteered my time, and I didn’t have a person who was depending on me that I’d become complacent and find a reason not to do it. But I knew if I had people who were looking forward to seeing me, I would hold true. It’s worked pretty good so far.”

Matt’s hospice volunteer duties range from typical requests like conversing with patients and taking them for wheelchair rides, to more uncommon tasks like building a wheelchair ramp for a patient’s home and folding towels with dementia patients. No matter the task, Hospice of the Red River Valley Volunteer Coordinator Stephanie knows Hospice can count on Matt. “He is always very eager to help patients however he can—even if he doesn’t know all of the skills he might be using upfront. You can tell he has a big heart, and he is very warm and giving,” she said. “His warmth and compassion are very endearing.”

Since Matt started volunteering with Hospice, he has worked with three patients, and he always finds a familiar refrain: a favorite memory is made. One such experience that left an everlasting impression on Matt is when his Hospice volunteer role shifted as his first patient, who suffered from dementia, was nearing the end of his life. “I worked with his family when I came to visit the last couple of times, and they were so open to me,” Matt shared. “They wanted to show me photos of him and tell me about all the accomplishments he had in his life. They wanted me to know what a great man he was. That part was a struggle. I felt I wasn’t worthy for them to tell me all the stuff about him. I felt like I was just lucky enough to share a little glimpse of this person’s life.”

Matt Mastrud_quoteThis volunteer experience and others with Hospice, at times, have brought up unexpected but welcome emotions for Matt. “I feel like I’m more positive now. It’s changed so much of how I look at things and how I interact with people. I’m not worried about so much, because there are bigger things. You have a higher bar for what’s important,” he explained.

Just as those he’s met through Hospice have touched him, Matt, too, has imprinted on the hearts those he’s encountered. “We’ve heard so much positive feedback from the Hospice nurses and social workers, as well as the patients’ families who have met him. He goes above and beyond. He never misses a visit. And he always puts patients before himself,” Stephanie said. “Families have actually called and asked how they can send a thank you to Matt. It just speaks volumes to how important his visits are and how big of an impact he’s made. We’re very thankful for the work he does.”

Even though Matt’s a busy artist and family man with a wife and two kids, a daughter, 9, and son, 14, he’s certain he’ll always find time to volunteer with Hospice. “I’m pretty sure it’s a forever thing,” he shared. “Actually, I’m positive it is.”

Read more volunteer stories here.

April 12-18, 2015, is National Volunteer Week! At Hospice of the Red River Valley, we’re fortunate to have many dedicated volunteers. We celebrate their contributions to the organization and the ways they enrich our patients’ lives. Click here to find more information about our volunteer program and learn how to apply.

About Hospice of the Red River Valley
Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email questions@hrrv.org or visit www.hrrv.org.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2015/04/14/good-deeds-fellowship-hospice-volunteer-aims-to-make-a-difference/

Mar 24

Angels in Disguise: Husband Recalls Wife’s Experience with Hospice

“We traveled all over together, her and I,” Gerald ‘Toot’ shared about his late wife, Dee. “All you had to say to her is, ‘Dee, how would you like to … ?,’ and she would say ‘yes’ right away. You wouldn’t even have to finish what you were going to ask. She was willing to go any place, any time, anywhere. She was just so sweet.”

Toot and DeeMaking cherished memories together—and with loved ones—was always a priority for the happily married couple of more than 25 years. So when Dee was diagnosed with brain and lung cancer in summer of 2012, which had spread throughout her body, Dee knew immediately she wanted to focus on making the most of the precious time she had left with her beloved husband, family and friends.

The couple discussed options for treatment with Dee’s doctor, including surgery, chemotherapy and radiation. “Dee said no to chemo treatments and surgery,” Toot said. “And that was the smartest thing we ever did. She had a good quality of life right up until her end.” A steadfast faith guided Dee throughout her life, and especially as she neared the end of her life. “She said, ‘Whatever the Lord has dealt for me, I’ll accept,’” Toot recalled. Dee received five radiation treatments to help shrink the brain tumor, and she and Toot decided—together—that Dee would begin hospice care so she could remain at home with her husband.

For four months, Toot cared for his wife with the assistance of Hospice of the Red River Valley staff, including a certified nursing assistant, registered nurse, social worker and chaplain. “Once we signed on with Hospice, it was a Godsend,” Toot said. “Hospice was there when you wanted them. They helped me so much; I could never say enough about how much they helped me. They showed me what I was supposed to do and how I was supposed to do it. It meant a lot to me because it meant I could have Dee at home with me.”

Toot_quoteMeticulous note taking and precise attention to detail helped Toot manage Dee’s daily care routine and provided Hospice staff with insight into daily happenings with Dee. Hospice staff kept the pair well informed, too. “If I had any questions, they answered them, and they even gave me answers to some questions before I asked them. One day I was thinking, there must be some signs of the impending death, and before I got a chance to ask, the nurse came to visit with a little booklet; it was just what I wanted,” Toot explained. “They took care of the medicine and things that we needed right away. One time I called them at 2:30 a.m., and I got someone to come out. Where else do you get that kind of help?”

Being at home, rather than in a hospital, enabled Dee to accomplish many things on her bucket list and create many more moments with her loved ones, including frequent tea parties with her girlfriends, lunch dates, shopping and attending her son’s wedding as the matron of honor. “Dee knew she was going to die, but that didn’t stop her from living. Life gave her lemons, and she made lemonade all the way,” Toot described.

The couple even made a trip to the state’s capitol city to visit Dee’s sister and friends and take a final dip in the Missouri River. “Hospice checked in with us every day when we were in Bismarck just to make sure everything was OK. I thought, wow! I think we had better care at home than what we would’ve had somewhere else, and Hospice made it so that we could stay at home,” Toot said. “They [Hospice staff] treated us with such dignity. They’re saints!”

Another interaction with Hospice staff that stands out in Toot’s mind is a pointed but gentle conversation Dee’s Hospice of the Red River Valley social worker, Cathy, had with him. “They [Hospice staff] also straighten you out if you screw up,” he explained. “Dee wanted to have a lot of get-togethers with friends, and this was at the time when she was starting to get weaker and weaker. I told Dee that I thought we better stop the visits.”

Cathy and Dee

Dee with Cathy, Hospice of the Red River Valley social worker

Dee wanted to continue having her regular gatherings with her friends, and she shared that with Cathy. “Cathy came to our house after that conversation and asked me about it. Cathy said it wasn’t my decision—that it was Dee’s decision. And she should continue having them. Cathy did such a terrific job.”

“As family members we want what’s best for our loved ones and we try to protect them, conserve their energy and do things for them,” Cathy shared. “The reality is that our patients want to ‘live’ what time they have left, and they know their limitations better than we do. The greatest gift we can give them is to help them live.”

Dee passed away peacefully at home on Nov. 7, 2012, surrounded by those who loved her most. And since then, Toot has found a new kind of support through Hospice: one-on-one visits with Bereavement Manager, Wendy, and ongoing grief support groups. “There have been some times when I felt down when I came in for grief support, but boy, when I’ve left, I have felt like a new person! Your facilitators are so great,” Toot said.

“The death of a spouse is known to be one of life’s most stressful events bringing about feelings of loss and loneliness,” Wendy shared. “Toot is a joy to have in support group sessions. He often offers a word of encouragement to new attendees with the constant message of there is no time frame for grief, and everyone grieves in a different way. He has worked hard on his grief journey and openly expresses how losing Dee has changed his life, while also embracing his treasured memories of her.”

“Dee always said, ‘I am so lucky to have these angels on Earth taking care of me,’” Toot shared. “She was talking about the Hospice staff. She loved the people at Hospice dearly. You can’t put Hospice into one word or sentence. They will help you to the end, and they helped me as much as my wife.”

Watch Toot discuss Hospice of the Red River Valley’s care of his wife, Dee.

Upcoming Events
Hospice of the Red River Valley is pleased to offer FREE community grief classes and workshop for adults and children this spring. Click for a complete listing of the spring grief classes.

Journeying Through Grief is a class designed for those who are recently bereaved. It is intended for adults 18 years and older who have experienced the recent loss of a loved one. The sessions will help you better understand the grief process, explore methods of self-care and embrace and carry memories with you as you move forward. Classes will be held at several locations, including Fargo, LaMoure, Lisbon and Valley City, N.D.

Youth Journeys is a day-long program for youth, ages 6 to 18, who have lost a loved one. Parents/guardians are also required to attend a portion of the day program. The day is broken down in sections, allowing youth a chance to explore how the death of their loved one has affected their lives, feelings they have, self-care and embracing memories. The day ends with a service of remembrance. Youth Journeys will be held in Fargo, N.D.

About Hospice of the Red River Valley
Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email questions@hrrv.org or visit www.hrrv.org.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2015/03/24/angels-in-disguise-husband-recalls-wifes-experience-with-hospice/

Mar 17

Unexpected Connection: A First-time Volunteer’s Rewarding Experience with Hospice

Julie S.When Julie Swiontek first considered volunteering for Hospice of the Red River Valley, she thought office work suited her best, and she never dreamed she would visit patients. “I thought, ‘I don’t know how to start conversations. What do I do if something happens?'” she explained.

Julie spoke with Hospice Volunteer Coordinator Kristi Sherven, who reassured Julie that all Hospice volunteers are thoroughly trained on what to do if something happens and who to contact if she needs help. “She was very good at alleviating any fears and concerns I had,” Julie said.

In June 2014, Julie was matched with a patient with Parkinson’s disease whose wife had recently passed away. Kristi said, “Julie’s first match has been perfect. Prior to visiting her patient the first time, she and her husband researched Navy ships, which the patient had served on, so she would have something to talk about on their visit.” Julie used the information she found and created a list of questions she could use to strike up a conversation with the patient.

“Our first conversation was awkward,” Julie said. “He didn’t know me, he had lost his wife two days before, and he was not in a great frame of mind.” But Julie kept trying, and her list of questions helped a great deal. “It helped me relate to him and communicate with him. Every time we meet I ask him a few questions about his time in the Navy . . . and now just three months after meeting each other, he’s initiating conversation.”

Julie and the patient spend time going on wheelchair rides and visiting. When the weather is dreary or he doesn’t feel well, the two sit by the aviary in his nursing home. “He loves looking at the birds, so we’ll sit and chat a bit,” Julie said. “It’s very calming.”

Communicating with a patient with Parkinson’s disease can be challenging because of the language difficulties. Julie said her patient didn’t reciprocate greetings or initiate conversation during the first few months they spent together. But recently that changed. Several weeks ago at the end of a visit, Julie put her hand on his knee and said goodbye. “All of a sudden, he took his hands and grabbed my hand with both of his,” Julie shared. “And he said, ‘Thank you for coming.'” Julie was surprised and struggled to contain her emotions as she left the building. “He had never done that before,” she said. “After that he has always said, ‘Thank you’ or gotten excited when I say, ‘See you next week.’”

Julie didn’t initially expect to connect with her patient so well, but it’s something she’s truly enjoyed. Julie said the patient “loves to smile and gets this little grin on his face. He has a very good sense of humor. I feel like he’s giving me more than I’m giving him, that’s for sure.”

Julie has advice for those considering volunteering for Hospice who are uncertain about what to expect. “I would tell people not to be afraid of hospice,” she said. “[Visiting with patients] is one of the most rewarding experiences of my life.”

Upcoming Events
Hospice of the Red River Valley is pleased to offer FREE community grief classes and workshop for adults and children this spring. Click for a complete listing of the spring grief classes.

Journeying Through Grief is a class designed for those who are recently bereaved. It is intended for adults 18 years and older who have experienced the recent loss of a loved one. The sessions will help you better understand the grief process, explore methods of self-care and embrace and carry memories with you as you move forward. Classes will be held at several locations, including Fargo, LaMoure, Lisbon and Valley City, N.D.

Youth Journeys is a day-long program for youth, ages 6 to 18, who have lost a loved one. Parents/guardians are also required to attend a portion of the day program. The day is broken down in sections, allowing youth a chance to explore how the death of their loved one has affected their lives, feelings they have, self-care and embracing memories. The day ends with a service of remembrance. Youth Journeys will be held in Fargo, N.D.

About Hospice of the Red River Valley
Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email questions@hrrv.org or visit www.hrrv.org.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2015/03/17/unexpected-connection-a-first-time-volunteers-rewarding-experience-with-hospice/

Mar 10

Helping Your Parents Deal with Loss

Janna KontzBy Janna Kontz

My Dad was an amazing man. He had an eighth-grade education, but he never allowed that to hold him back. He was incredibly intelligent and loved to be challenged by things like serving on the school board and church council and being District Governor of the Lions. He was great at math and helped all of us with our homework well into high school and beyond. He was creative and artistic and loved to collect toy tractors. Dad could strike up a conversation with a total stranger, and in 10 minutes, know the person’s life story!

We lost him, bit by bit, to the devastating effects of dementia. He died in March 2014, but we started losing pieces of Dad in 2009.

My Mom has been incredible through it all. She has lost the most. Over time, she watched her strong, independent husband become indecisive and physically too weak to even turn a doorknob. She’s had to experience her husband, who typically had a great sense of humor, become angry and withdrawn. She did the driving, balanced the checkbook and took care of any house maintenance. She also took on all of his personal cares—even when my Dad didn’t want them done.

As I’ve watched my Mom go through all the loss in recent years, I’m continually humbled by her strength and resilience. Eighteen days before Dad died, my Mom finally said she couldn’t do it anymore and we moved him into a nursing home. He also started Hospice at that time. In that moment, she not only lost the physical presence of her husband day-in and day-out, but she also lost her home. Dad moved into a nursing home near where my sister lived so Mom was able to move in with her. Now she has moved to a townhome close to my sister, so she lost her church family and her community, as well.

How do we help our parents through all of the losses when they seem to come at them faster than even we can handle? Being in the midst of it as a daughter, I’ve realized the most important thing we can do to help our parents deal with loss is to show up. Show up for a visit. And when you can’t do that, show up with a phone call. And when you can’t muster a conversation, show up with a text or an email or a card in the mail.

They need to know you genuinely care about their loss—not just your own. Acknowledge their loss. Allow them to talk about it and grieve the loss and shed tears. Allow them to be sad when they need to be sad and mad when they need to be mad, and give them permission to be happy again. When their grief seems too much to handle, make sure they are connected to a larger support system than just family. Make sure they have some friends who have been through some of these same losses. If they are open to it, connect them to counseling. And show up. Show up on birthdays and anniversaries. Show up for the things most important to them—whether that is church or a concert, or just for supper. Show up.

Our parents are a gift to us, and they won’t be around forever. Tell them you love them. Let them know you care … and show up.

Janna Kontz is a chaplain with Hospice of the Red River Valley.

Upcoming Events
Hospice of the Red River Valley is pleased to offer FREE community grief classes and workshop for adults and children this spring. Click for a complete listing of the spring grief classes.

Journeying Through Grief is a class designed for those who are recently bereaved. It is intended for adults 18 years and older who have experienced the recent loss of a loved one. The sessions will help you better understand the grief process, explore methods of self-care and embrace and carry memories with you as you move forward. Classes will be held at several locations, including Fargo, LaMoure, Lisbon and Valley City, N.D., and East Grand Forks, Minn.

Youth Journeys is a day-long program for youth, ages 6 to 18, who have lost a loved one. Parents/guardians are also required to attend a portion of the day program. The day is broken down in sections, allowing youth a chance to explore how the death of their loved one has affected their lives, feelings they have, self-care and embracing memories. The day ends with a service of remembrance. Youth Journeys will be held in Fargo, N.D.

About Hospice of the Red River Valley
Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email questions@hrrv.org or visit www.hrrv.org.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2015/03/10/helping-your-parents-deal-with-loss/

Feb 24

Embracing the Final Journey: Hospice Helps Husband Care for Wife with Alzheimer’s

Bill_quote“I will take care of you as long as I can,” Bill explained to his wife, Judy, in May 2008 after leaving the doctor’s office. Judy had just been diagnosed with Alzheimer’s disease. “That was the only time she questioned what would happen to her when she didn’t know anyone anymore,” he said. “She never asked again after I promised her I would do my best.”

For more than six years, Bill has done just that—providing loving care to his wife of 51 years. Throughout their long and happy marriage, the couple has spent little time apart and has always relied on each other, no matter what. The life they’ve forged together is one filled with love and countless adventures, including a visit to every national park, building their own home, moves to multiple states and raising two children, a son and daughter. Bill and Judy have chartered the course with an unwavering faith, which they relied on when working side by side as co-administrators at a Christian camp near Medina, N.D., for 17 years. The pair has also found great joy as sports enthusiasts with their favorite team, the Green Bay Packers, hailing from their home state of Wisconsin.

With the life Bill and Judy built together, it was a never a question for Bill regarding if he would care for Judy after her life-changing diagnosis. Along this final journey, Bill and Judy have encountered many challenges, but Bill’s positivity and sense of humor have helped the pair navigate through each day. “I found out that in order to go through this, I needed to have a sense of humor,” Bill explained. “She’s done things because of her illness and instead of getting upset about it, I have laughed about it, and in turn, even made Judy laugh too. Certain situations have turned into a good thing instead of bad. I have had to understand that there is no right or wrong way to be a caregiver. I just need to do the best I can.”

Bill and Judy S.

Just as approaching each new day with positivity has helped, so has the assistance of Hospice of the Red River Valley. After caring for Judy by himself for five years, Bill looked into hospice care for extra support after a recommendation by Judy’s doctor. “I didn’t think Hospice would be able to help since I thought she hadn’t progressed far enough. But we met with Hospice that same day, and they were able to start helping right away,” Bill said. “Hospice has helped me out tremendously. It’s been a lot of help because as her condition worsens, it’s gotten harder to move her around, and it’s taken a lot of burden off of me.”

Hospice staff, including a certified nursing assistant (CNA), registered nurse (RN) social worker and chaplain, make frequent visits and help with everything from personal cares for Judy and medications assistance to respite care coordination.

Hospice of the Red River Valley RN Kelcie works with Judy weekly and praises Bill for caring so well for his wife and taking advantage of the full array of Hospice services. “He does a wonderful job taking care of Judy,” Kelcie said. “He has really embraced all that hospice has to offer, such as monthly respite, weekly volunteer services so he can go grocery shopping and CNA services three times a week. Recently I have also started bringing him resources and books from the Hospice library, which he has really enjoyed. His acceptance of extra support has helped him be the best caregiver for Judy.”

“I didn’t realize everything they provided. I just thought it was more of a final thing—like in the last few weeks of someone’s life,” Bill shared. “Come to find out, they have been able to take care of her for a long time as her illness continues to progress. I know Hospice will be there to help. It’s meant a lot to me, and we really appreciate it.”

Bill and Judy with Kelcie

Bill and Judy with Kelcie, Hospice RN

Bill is especially thankful for the monthly respite services that Robyn, Hospice of the Red River Valley social worker, coordinates, which allow him to take care of his own appointments and have a few days to recharge so he can continue taking care of Judy. Five days of every month, Judy receives respite care at a local skilled nursing facility. “We’ve been doing that for some time now, and that gives me a chance to get some things done too,” Bill said.

Being able to schedule respite services in advance have even allowed Bill to attend a movie, baseball game or ride his bike every now and then. Caregiver burn out is something many caregivers face, so scheduling a monthly break for Bill to get his owns needs met is a part of the hospice plan of care. I’m glad he is taking care of himself too because that’s important,” Robyn said.

“The end of our days, when we are dying, are just as precious as those first days as a newborn. As for my staying true to my commitment to take care of my wife from the beginning to the end of her journey with Alzheimer’s, well, it has been easy for me to take care of Judy because I can still see the Judy I met on New Year’s Eve in 1958, the person I fell in love with, married and spent 50-plus years with. It has been a joy, and Judy is the real hero of this story.”

Bill and Judy S._hands

Bill holds Judy’s hand during a visit with Kelcie.

About Hospice of the Red River Valley
Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email questions@hrrv.org or visit www.hrrv.org.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2015/02/24/embracing-the-final-journey-hospice-helps-husband-care-for-wife-with-alzheimers/

Feb 10

Comfort and Care When We Needed it Most: My Hospice Story

by Diane Samuelson

Hospice is comfort. Hospice is support on a very long and sometimes very lonely journey.

My Dad was terrified of dying and wanted to be at home. He was born in 1908, and grew up during a time when nursing homes and hospitals were very different than the facilities of today. Dad got sick in the spring of 1984. When his doctor told him the cancer had spread and very little was left to be done, he made my mother promise that he would never have to go back to the hospital or move to the nursing home. She promised.

As the days passed, she became worried about the reality of caring for him as his needs increased. A family friend told her about something called “hospice.” None of us had any idea what that meant, but Mom called and before long Hospice of the Red River Valley became part of our family. Over the next months, staff members, both volunteer and paid, helped us take care of Dad. They [hospice] just made everything easy. They had people come and help her with cares and pain and support for my mom. And it was very strange. They never overwhelmed everyone. They were just there. At the end of May, as Mom was singing a lullabye, he took his last, peaceful breath. He was in his bedroom at home. The year was 1985.

In 2003, Mom started failing and we knew time was short. When my mom got sick, my sister said, “Well, I hope you don’t mind but I called hospice this morning. And it was like, [sigh] yeah, that’s what we need. My sister made a phone call, and once again Hospice of the Red River Valley became a part of our family. The faces and names had changed over the years, but the care and support given to Mom and our family was just as remarkable and a blessing. After a few months of care, Mom died comfortably with family at her bedside.

When people call hospice or hear of hospice they think it’s going to be stressful and there’s going to be pain and they’re going to come in and tell me what to do and they’re going to take over. [shakes head no] They’re just a calming presence. They understood. They didn’t judge or try to change anything. I think that was the biggest part. It was like having a good friend that you could lean on. They’re just there. It was almost as if they could anticipate any questions we had, any concerns, any fears, anything, and they knew what to do. And, it wasn’t just my parents who received the care. It was me, it was my sister, all of us.

To this day, I can’t explain the pull I felt then (and still feel) toward Hospice. For all Hospice has given to me and my family, I would have scrubbed the floors for them if that was the only way I could give back. Fortunately for me, I didn’t have to scrub floors; I started volunteering in late summer of 2003, and was lucky enough to be hired in 2006.

Hospice has given so much to my family, and I agree with Hospice of the Red River Valley’s philosophy that anyone who wants and needs hospice care should have it available to them. What this organization has done for me and my family is just beyond words. For these reasons, I donate to Hospice of the Red River Valley. Please join me.

On Feb. 12, 2015, Hospice of the Red River Valley will participate in Giving Hearts Day, a 24-hour online fundraiser hosted by impactgiveback.org.

To participate, visit impactgiveback.org on Feb. 12. Gifts of $10 or more made to Hospice of the Red River Valley during the event will be multiplied by match dollars from TEAM Industries!

About Hospice of the Red River Valley
Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email questions@hrrv.org or visit www.hrrv.org.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2015/02/10/comfort-and-care-when-we-needed-it-most-my-hospice-story/

Jan 27

Volunteering with Hospice: A Language of the Heart

For Arlene Schneider, a volunteer with Hospice of the Red River Valley, her experience started out like many others who give of their time, “I was retired, and I like to be busy,” she said. “I was looking for something to do, and they [Hospice] needed the help.” Arlene quickly realized her time with Hospice was anything but ordinary when she started visiting Hospice patients.

Arlene Schneider“At first, visiting patients was difficult with me, because I’ve lost so many people in my life,” Arlene explained. “But now I’m really comfortable with the process, and I feel joy when I am able to help a patient and their family members.”

Spending 10 hours or more volunteering for Hospice each week, Arlene provides respite and Pathway visits and also works as an office volunteer in the bereavement department in Fargo. “I just love it [volunteering],” she said. “I love people and connecting with patients and families. When someone says, ‘Thank you,’ and you can see it’s really sincere, it’s worth every minute.”

Just as each patient is different, so is Arlene’s approach to connecting with patients. Carefully and thoughtfully, she molds each visit around a person’s interests. Recently she read a book about World War II to brush up on her history knowledge in preparation for a visit with a veteran. “It has to be different for each patient,” she said. “What you get out of volunteering is what you put into it.”

Arlene also visits an elderly woman with Alzheimer’s disease. Even though the patient doesn’t recognize Arlene when she visits, Arlene believes the time they spend together truly makes a difference. “She greets me with a hug every time I visit her,” Arlene said. “She always stretches her arms out to me, and says, ‘Can I love you?’ All she wants is a hug, and she gives me another hug before I leave and says, ‘You’re going to come again, aren’t you?’ That speaks to the heart.”

Although Arlene enjoys all types of hospice visits, she cherishes Pathway visits, for patients who are within days of dying, the most. “When my husband passed away, I was alone,” she said. “I didn’t know about hospice care then. I appreciate that with hospice care, there’s all these other little corners where someone fills in for you. It makes a big difference for the families.”

Arlene Schneider“When a family member needs a break, it’s so nice to be able to walk in, and say ‘I’ll sit with your loved one so they don’t have to be alone until you get back,’” she shared. “The hugs and thanks I’ve received after Pathway visits are worth every minute. It’s an honor, and you can’t put a price on that—knowing how much you’ve helped a family.”

One experience in particular has left a mark on Arlene’s heart. She sat with a patient at a nursing home during a Pathway visit, and within 10 minutes of her leaving, the patient passed away. The following week, the family of the patient returned to the same nursing home in hopes they would be able to express their sincere gratitude to Arlene. “To think a family would make a trip back to the place where their mother passed away just to tell me thank you and that they appreciated what I did for their mother was such a special moment,” Arlene said. “Hospice speaks to the heart. It’s not only what you give to others, but also what you feel inside.”

Deb, Hospice of the Red River Valley volunteer services manager, knows just how much people like Arlene mean to Hospice patients and their loved ones. “Arlene is a wonderful volunteer who gives so much to hospice families,” Deb said. “She is always willing to help with quick-turnaround requests to assist patients and families, and at times, she makes up to eight visits a week. We’re so thankful for her.”

After almost four years as a Hospice volunteer, Arlene has a plethora of heart-warming stories to share about her experience, and she doesn’t intend on quitting any time soon. “I will work with Hospice as long as I can,” she explained. “It’s just great to feel you’re with an organization that everybody really loves.”

About Hospice of the Red River Valley Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email questions@hrrv.org or visit www.hrrv.org.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2015/01/27/volunteering-with-hospice-a-language-of-the-heart/

Jan 13

An Attitude of Gratitude: Couple Gives Thanks for Extra Support

During any visit with Mike, a Hospice of the Red River Valley patient, and his wife, Eileen, you quickly realize you’re gaining an unintentional education in grace and gratitude. The couple is warm, welcoming and unassuming. Mike faces serious health challenges, but rather than becoming bitter, they are acutely aware of the blessings and kindness surrounding them.

Mike B_quote

In mid-September, Mike began receiving care from Hospice of the Red River Valley after he decided to stop chemotherapy treatments. “Discontinuing treatment was hard, but also good, because it was wearing him down. You’re in one day for blood work, the next for treatment, the next for a shot. Going to the hospital four days a week, at times, was just too taxing for him,” Eileen explained. “My doctor suggested we talk to Hospice, so we talked to a hospice nurse that same day,” Mike said. “The transition into hospice care was seamless,” he added.

Initially, the word “hospice” was intimidating to the pair. But after witnessing first-hand the care and extra support hospice provides, they know hospice was the right choice for their family. “At first you hear hospice, and it is a little scary, but it’s not a service to be fearful of. You’ve got to run to it with open arms and let them embrace you because they’re going to help you so much. Hospice takes a lot of weight off a person’s shoulders,” Mike said.

Mike and Eileen

Mike and Eileen

Prior to starting hospice care, Mike and Eileen weren’t fully aware of the extent of services and equipment available through Hospice. “You think you know, but you really don’t until you experience it. I can’t say enough about hospice. We have our team, and they always call and ask if we need anything. They do not leave you wanting for anything,” Eileen shared. “What surprised me the most is that they respect our wishes. If we need something, we call and help is there. I tell you what, they are wonderful!”

Small requests to Hospice, like a different chair for the shower, have made Mike’s daily care routine easier for Eileen to manage. “It helps me take care of him. I know Hospice would be happy to come out and help me. But it’s something I want to still be able to do for him,” she said. “If I need something, I just ask, and I’ve been impressed by how quickly they’ve responded,” Mike said.

With the transition to hospice care, more guests, including Hospice staff, family and friends, have visited Mike and Eileen than usual. The extra attention and numerous good deeds have proved to be a blessing for the couple who live in rural Gardner, N.D., 35 miles north of Fargo. “People want to do something to help,” Eileen said. “And, it’s a ways out here; it’s nice having extra help, especially with winter coming.”

A new addition of a wheelchair ramp, running from the house to the garage, is a combination of the time and talents of many people, including Mike’s dad, Nils, his brother, Jon, and a Hospice volunteer, Matt, among others. The idea for a ramp came from Nils who was hoping to ease the trips in and out of the house for Mike and Eileen. “My brother and my dad came up with a pretty nice structure and drew the plans for it,” Mike said. “They [Jon and Nils] had it planned out perfectly; they knew exactly how much lumber to buy,” Eileen said.

Mike and Matt

Volunteer Matt with Mike.

The project came to life in just one day with the helping hands of Matt, who traveled from Fargo to assist with the build. Even though they had never met Matt before, Eileen said, “He just fit right in, and he interacted so well with our family. Everyone loved him, and he worked hard.” “What a wonderful person he is,” Mike added with a smile.

“There was really no pause. They were all open-arms and super nice right away. It was a great day,” Matt said. Originally, Matt was only planning to stay for a couple of hours, but once he got involved in the project and felt the warm, small-town community spirit around him, he knew he had to stay until the ramp was complete. “I just knew there was no way I’d be able to leave until I saw him ride that ramp,” Matt shared. “How often do you get to walk into a whole community and you’re welcomed with open arms and you all have the same goal of making someone’s life a little easier and better?” The family appreciated Matt’s help so much that they even invited him to stay for a classic Midwestern lunch—tater tot hot dish.

Mike B._Ramp Project

Family and a Hospice volunteer helped build the ramp for Mike.

Now the distance to and from the car is steady and stable not only for Mike’s wheelchair, but also for his peace of mind. “I don’t have to worry about her [Eileen] falling or hurting herself now,” Mike explained. “How do you thank people for that? You feel like you have to do more or do something for them. You just have to accept what they did and move on. It is just unbelievable how nice people are.” Eileen’s feelings mirror those of her husband’s. “The ramp is just as smooth as can be—no bumps whatsoever. It means a lot to us.”

With each passing day as winter settles in, Mike and Eileen are grateful for the extra support and assistance of everyone, including Hospice. And, as Eileen says, no matter the weather, “the people are always ‘warm’ year round,” and both Mike and Eileen are thankful for that.

Mike passed away on November 29, 2014. His remaining time at home was peaceful and comfortable.

About Hospice of the Red River Valley
Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email questions@hrrv.org or visit www.hrrv.org.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2015/01/13/an-attitude-of-gratitude-couple-gives-thanks-for-extra-support/

Dec 29

Reaching the End Zone: Hospice Staff Go Long for Patient

DennisWoven tightly into the fabric of his life, sports and a sense of brotherhood remain close at heart for Dennis, Hospice of the Red River Valley patient. Even with a prognosis of five to six months to live, Dennis and his partner, Cindy, are determined to make the most of the time he has left by living life to the fullest—embracing each precious moment and new experience.

Three weeks ago, complications from a blood transfusion procedure caused by a weak heart led Dennis to hospice care. “He wanted to go home,” Cindy explained. Besides the comfort of his own home, Dennis wanted to spend more time with his family, and have the freedom to go out and about in his small rural town of Walcott.

With the assistance of Hospice staff, the past few weeks have been a true blessing, beyond measure, for the couple. Shortly after beginning hospice care, Dennis and Cindy met with Cathy, a Hospice social worker, to determine their needs. Cathy explained that during her first meeting with a patient and family, she always asks the same two questions: “Is there anything you’re worried about? Or is there anything you still want to do?” These questions sparked conversation.

Dennis and Cindy

Dennis and his partner, Cindy.

“I told her about things I knew Dennis wanted to do,” Cindy said. “He’s been wanting to go to a Bison game and reunite with a long-lost Army buddy.”

“I’m always up for a challenge, and I love to surprise people and make people’s wishes and dreams come true. There aren’t too many dreams we can actually fulfill,” Cathy explained. “Most people have had their diagnosis long enough that they’ve tried to accomplish all the things they’ve wanted to do. But I thought Dennis’ dreams didn’t seem like over-the-moon requests, so we could try.”

Cathy worked diligently to secure two tickets to North Dakota State University (NDSU) Bison football game and tracked down Dennis’ Army friend, Leo, with some information provided to her by Dennis. Additionally, Cathy requested a small gift of $150 from the Hospice Institute, which Dennis will receive soon, to help offset travel expenses for the trip to visit his friend.

“I didn’t know Cathy could help with locating Leo,” Dennis shared.

“That was just amazing and heart touching. She has been an angel and done a great job.”

“There are those people who are just so genuine; being able to do that for him was so great. It’s just one of those things that’s not about anybody else besides him [Dennis], and he was just so deeply appreciative,” Cathy said. “The rewards we experience from the people we meet are the best part of my job.”

Dennis and Rick

Dennis and his nephew, Rick.

On Oct. 18, 2014, Dennis attended a NDSU Bison home game with his nephew, Rick. The game was the perfect epilogue to Dennis’ decades-long love affair with Bison athletics. Dennis first became interested in the Bison 20 years earlier after taking his nephew to countless men and women’s basketball games. “My nephew more or less coaxed me along to get into the games,” he said. “And I started to really get into them after a while.” As for Bison football, the past three years have been the most enjoyable for Dennis, so the opportunity to attend the recent game with his nephew was especially sweet. “I’ve never been to a team [game] like the Bison—winning and that,” Dennis described. “It just meant everything in the world [to me].”

Just a week later, accompanied by Cindy and his stepson, Dennis was finally reunited with his friend, Leo, in Watertown, S.D. The pair spent two years together in the U.S. Army, beginning with basic training through air defense schooling, an overseas deployment and finally the ride home on the same bus after their discharge. Although 50 years had separated the two, they recognized each other immediately.

Dennis and Leo

Dennis and his Army buddy, Leo.

“As soon as Leo came in the door, even from quite a distance, I recognized him,” Dennis said with excitement. “I’ve always wanted to see him again. I don’t know how to explain it, [it’s] like long-lost family member. He recognized me too, and that’s all that counted.” Over a warm meal, they shared stories of their Army adventures and made plans to see each other again. “It was touching to see him again,” Dennis said. “We’re the best of friends.”

Both experiences have touched Cindy’s heart and solidified her feelings about hospice care. “I think the main stigma people have about hospice is that you don’t get on it until the last days,” she shared. “You can get on hospice and have some valid times and be active. Hospice doesn’t just mean you’re in a bed,” she explained. She urges others who may be appropriate for hospice care to look into hospice sooner rather than later. “Don’t wait to get on hospice care because they can help,” she said. When asked by loved ones if Dennis should be so active, she says, “Why not? You’ve got to do it while you’re up and about and able to.”

These special moments of life have meant so much to Dennis, but he’s most thankful for the medical care he’s received. “They’ve [Hospice staff] done a lot for me. It’s made me feel a lot better, and you couldn’t have gotten much better care anywhere else. They’re up-front with me, and I feel safe with them,” Dennis said. “They’re sticking right with me. I’d recommend it to anybody.”

Cindy has found comfort in the care Dennis receives, too, and confidence in knowing she can ask questions along the way. “I utilize the nurses; I call them and they’re really good about responding right away. So I don’t hesitate to call them to ask what’s going on,” she said. Dennis is equally pleased. “I’ve got some great nurses who know what they’re doing. They help me in every way. If they can’t answer my questions, they will check with someone else. So I always get an answer,” he said. “They’re [Hospice staff] making my last months and days enjoyable. What more could you want?”

Watch Dennis discusses his experiences in the video below.

Your support makes a difference in the lives of others, like Dennis and his family. Please consider giving a gift that will provide comfort, dignity and respect to our patients and their families. Learn more about ways to support our care or donate online today.

About Hospice of the Red River Valley
Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email questions@hrrv.org or visit www.hrrv.org.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/12/29/reaching-the-end-zone-hospice-staff-go-long-for-patient/

Older posts «