“Caregiving is hard work. Caregiving is pain. Caregiving is loving and giving and sharing. Caregiving is accepting and learning new things and going on, and on, and on. Caregiving is lots of questions and very few answers. Caregiving is being out of the mainstream. Caregiving is learning what it means to die with dignity and making sure your loved one’s wishes will be honored. Caregiving is all these things and a whole lot more.”National Family Caregivers Association and the National Alliance for Caregiving

For Steve Slabik, Hospice of the Red River Valley’s director of finance, caregiving was the most rewarding experience he’s ever had.

Steve is one of approximately 65.7 million people in the U.S. who have served as an unpaid family caregiver, 34 percent of which are male.* Even though males make up about one-third of total caregivers, sometimes they are more likely to encounter certain challenges than their female counterparts, including isolation, stunted emotions, an inability to ask for help and support, insufficient self care and challenges with day-to-day household tasks.

For four years, Steve cared for his wife, Shirley, who suffered from breast cancer, and their two young children. As a stoic Midwesterner and classic male, Steve had a hard time sharing his feelings. “I couldn’t even recognize them. For the first year, there wasn’t time for anything, including processing my emotions. I remember feeling exhausted. Between treatments and trying to maintain a job and normalcy for the kids, we tried to remain upbeat and keep hope.” Steve remembers.

Like many male caregivers, Steve did not have a support system apart from his ailing wife. “I felt alone and very isolated. I’ve always had a hard time asking for help. That’s just who I am. Thankfully, Shirley’s friends took care of bringing meals; they even managed a schedule,” Steve says. “In retrospect, I wish I would have just asked for help. Sometimes people would say, ‘Let me know what I can do …’ but I found those words hurt the most. The people who wanted to help just did, without me asking. I didn’t know what we needed. We found many of our old friends disappeared. They didn’t know how to deal with it and weren’t comfortable being around.”

It wasn’t until after Steve started attending a support group, 18 months after Shirley was diagnosed, that he was able to recognize he needed help and how to ask for it. Steve recalls, “The support group helped me see that I was worthy of asking for help, and reminded me I had to take care of myself, too.”

Still, he faced other challenges. “I struggled with not knowing what priorities were most important to my wife. Should I have spent more of my time taking care of her or the kids or myself? In retrospect, we probably didn’t talk enough,” Steve says. “I felt like I should just know and did what I felt was most important. I had to trust my instincts and hope I was doing the right thing. Shirley was a stay-at-home mom; I even had to learn household tasks as I went along. I just had to do the best I could.”

Now, Steve looks back on his time as a caregiver for his late wife with pride and gratitude. “The whole experience was actually rewarding. Breast cancer was the worst thing that ever happened to my wife, but in a roundabout way, it was the best character-building thing that ever happened to me, because it changed who I am. I became more active and engaged with my wife, kids and family. It made me who I am today. I like to think I have my priorities straight now, when I probably didn’t before. It made me realize what was most important.” Steve shares.

Most surprising for Steve was the fact that he could handle the challenges of caregiving. “I found strength I didn’t know I had. I did what I had to do for my family without a second thought,” Steve says.

If you know a caregiver, either male or female, consider reaching out. The physical, emotional and time-consuming toll caregiving takes can leave a person exposed to burnout and isolation. Offer to help with household tasks, cooking or errands. Your support may help a caregiver feel less alone with the job.

What other challenges do caregivers face? What are other ways people can provide help and support? Please leave your feedback in the comments section.

*Source: Caregiving in the U.S., National Alliance for Caregiving in collaboration with AARP, funded by MetLife Foundation, November 2009.

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2011 marked 30 years of compassionate end-of-life care provided by Hospice of the Red River Valley throughout eastern North Dakota and northwestern Minnesota. As we begin 2012, we remember our roots with nostalgia and pride, and reflect on the values embraced by our early dreamers and believers—respect for the dignity of people, belief in the quality of life, a willingness to serve and a commitment to caring.

To celebrate 30 years, a collection of stories have been written about our earliest days, cherished memories, community supporters and those who have sustained the organization. We hope you’ll enjoy this collection:

In the Beginning: Staff Memories of Hospice’s Earliest Days
Hospice of the Red River Valley has fulfilled a vital need for dignified, compassionate end-of-life care since its inception 30 years ago. Several staff members have served the organization since its earliest years. Together, they reflect on the changes along the way and the memories they’ve shared as Hospice of the Red River Valley established a reputation for excellence. Read more. 

Pursuing Our Vision of Hospice
Personal experience was the driving force that prompted Dr. Campbell, a physician in Sanford’s Family Practice Department, to become an enthusiastic board member and medical director during Hospice of the Red River Valley’s early days. Read more. 

A Dream More Than Realized
Thirty years ago, a group of visionaries in Fargo, N.D. decided to make their dreams a reality by founding one of the first hospice programs in the region. Co-founder Joy Query recently shared the story of the organization’s grassroots’ beginnings. Read more.

Celebrating 30 Years of Fundraising Events: Pat Maris
Funds raised through special events have played a pivotal role in keeping hospice care available and accessible for the past 30 years. The Roger Maris Celebrity Golf Tournament is one of the longest-standing sources of financial support. Pat Maris, Roger’s widow, recently reflected on the tournament’s beginnings, and the family’s decision to support the work of Hospice of the Red River Valley. Read more. 

Celebrating 30 Years of Hospice Volunteers
Volunteers were critical to the inception of Hospice of the Red River Valley 30 years ago. Today, more than 500 volunteers share their time and kindness with patients and their families. Three of these volunteers— Leona, Gayle and Arlene—have served the organization since its earliest years. During their 56 years of combined volunteer service, they have spent thousands of hours providing companionship and caregiver relief to dozens of patients and families. Read more.

We have been honored to serve the Red River Valley for 30 years. Thank you to the thousands of donors and family members and the hundreds of staff and volunteers who have made this care possible through their support, trust, good will, plain hard work and the desire to do the right thing for individuals seeking peace and comfort at the end of life’s journey.

Do you have memories of your connection to Hospice of the Red River Valley over the past three decades? Please share your story with us through the comments feature.

Happy New Year!

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With the support of Hospice of the Red River Valley, Bob and his daughters were able to care for their wife and mother at home during her final months. In this video, Bob and his granddaughter, Cari, share memories of their experience with Hospice and what it meant to their family.

To read more about Bob and his family’s story, click here.

If you have questions about how your loved one or family could benefit from hospice care, give us a call at (800) 237-4629 or email questions@hrrv.org.

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By Jean Anderson

I still remember the conversation, and I still have the paper napkin. On it my dad had written, “If the time comes that I need to be in a nursing home, I hereby give my whole-hearted consent.” And then in his sprawling loopy handwriting, he dated it and signed it, “Lynn E. Anderson, Papa.”

As odd as it might sound, the conversation surrounding the signing of the napkin was jovial. Perhaps our words were casual because my family and I discussed old age, health and dying many times over the years. In fact, the signature on the napkin came about because, during our conversation over a meal, Dad had made the statement about his willingness to be in a nursing home if he needed to be, and I’d retorted, “I’d like that in writing please!”

Luck in living comes in many forms and I’ve found myself with more than a few lucky stars. My parents lived long, active, relatively healthy lives, each nearly to 90 years of age. Over time, we learned to speak easily about the challenges of health and shared our thoughts about death and dying. And I was able to be with both of them when they passed on to a different world.

Dad never did end up in a nursing home; instead he died at home under Hospice care. But oh, those conversations we had over the years gave me great grounding and solace for decisions that would have to be made as my parents faced the end of their lives.

Now, as I hear stories of friends’ parents facing death, I think of the ease I discovered in those discussions with my family. And I wonder, what are we learning from our parents about living and dying? What conversations, attitudes and actions will we carry into our own older years that will be a gift to our families?

My Aunt Lois died rather suddenly of a stroke while traveling in Scotland. Dashing to my parents’ place, I found my mom, sitting on the sofa, with her fingers stroking the fabric of her dress, and saying, “There comes a time . . . there comes a time for all of us.” The stroking motion of her fingers on the cloth, her gaze into the distance and then to me, coupled with her words, brought me a strange comfort.

Seven years later, she would repeat those same words to me as she lay in intensive care after suffering a couple of strokes. The neurologist and internist were at her bedside discussing whether to initiate a clot busting drug that might or might not lessen the effects of the stroke. The quality of her future life was unknown. That night my mom could still give us some laughter when she slowly said with a slur, “I can barely talk and I haven’t even been drinking!” 

As I held my mom’s hand, this time I was the one doing the stroking on the cloth of her gown. “You know,” I said, “we’ve talked about times like this. What are you thinking?” “Yes,” she nodded, and then again I heard her words, “There comes a time.”

“You are a remarkable family,” said the doctor, but I knew it was more a remarkable conversation than a remarkable family. It was my mom’s willingness to talk about death earlier in her life that made the end of her life so much better.

Conversations about living well and then dying well aren’t necessarily easy to have, but they are critical to the well-being of those we love. Because if we love them, finding a way around the awkward talk will bring a great comfort and a special grace to those left behind. This is the greatest gift of all.

Why not resolve to make your memories early and lasting? Make your final wishes known. Write your wishes down. Then talk with your family. Leave a dear memory and a great gift to your loved ones.

Jean Anderson is director of development at Hospice of the Red River Valley.

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By Mary Lou Dahms

Life has been different this year. And the upcoming holidays will be very different. That’s what happens when you lose someone you love. My mother died on December 31, 2010, and because she lived less than five minutes from us and I talked to her every day and saw her at least once a week, adjusting to a new normal has not been easy.

I’m the oldest of seven and, for the last many years, have been the enthusiastic hostess for Thanksgiving and Christmas. We made that adjustment after Dad died because it was just too hard to have Thanksgiving and Christmas at Mom’s without that wonderful man at the head of the table. Now, the head of the table at our home is gone also.

I’ve been thinking a lot about how to get through these two major family events and finally decided my strength comes from my attitude. If I face the holidays with dread, then they will be dreadful. So I’ve decided to summon up some creativity to put a new slant on the familiar. And by doing so, I will honor the memory of my mother.

This year for Thanksgiving, I’ll set the table with my grandmother’s dishes that were my mother’s. Then, because it’s my house, I’ll sit in Mom’s place. And since no one, and I mean no one, makes pie crust like my mother , I will make her pumpkin chiffon pie in a 9 x 13 pan. I think I may even have a small loaf of cranberry bread for each family to take home. Mom always brought one to me.

Mom and Dad’s wedding anniversary is during the holidays, and, for 30 years my sister and I sent them a red poinsettia on that day. After Dad died, we switched to a pink one for Mom. This year, I’m going to send the poinsettia to my sister. I think she’ll like that.

Right after Thanksgiving, Mom always sent each of her great-grandchildren (my grandchildren) an advent calendar. That’s my job now, and I’m even going to get one for myself. When Dad died, I bought a beautiful candle that only comes out around Christmas. It’s time for that candle to have a mate, so I’m going to buy seven more, keep one and send the other six to my sister and brothers.

Christmas morning brunch will be the same menu (hard to stray from the favorites!) and I’ll use Mom’s beautiful carolers for the centerpiece. Mom made a wonderful coffee cake that had a fantastic streusel topping, but it was often reserved for funerals or friends. I’m going to make that coffee cake for brunch and probably an extra cup or so of the topping.

New Year’s Eve will present the biggest challenge—the one year anniversary of her death. We’ll either invite several friends over (I learned to entertain from my mother), or I’ll give into the emotions and rewind the tape in my heart of Mom’s last day. Either one will be fine.

I’ve learned from our bereavement staff that you go through grief, not around it. For me, this holiday season, that means using a bit of imagination to navigate tough waters. I know this won’t make it better, but it just might make it easier.

Mary Lou Dahms is director of marketing and public relations at Hospice of the Red River Valley.

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