Spring 2024

Hospice Patient Kara Had a Wish for You: An Earlier Colonoscopy

Pumpkins were still perched on doorsteps last November when Agrace Hospice Care patient Kara and her family were enjoying an early Christmas dinner and decorations arranged by Agrace’s Wish program. But she had another wish—for you: a timely colonoscopy.

Scott and Kara

As Kara, 46, was dying of colon cancer, she and her husband, Scott, added this plea to her obituary: “Get timely cancer screenings, and advocate for an earlier colonoscopy age recommendation.”

As U.S. cancer death rates decline overall, colorectal cancer in people younger than 50 continues to rise.* Kara’s cancer was misdiagnosed as stress, irritable bowel syndrome and a kidney stone before she was finally sent for a colonoscopy that detected a tumor, Scott says. Young and strong, without any cancer markers, Kara expected treatment to work.

But when the news came that her cancer was too advanced to be cured, Kara knew she wanted Agrace, because we had also served Scott’s mother, father and stepfather.

Kara was admitted to Agrace’s Anderson Inpatient Unit in early October for general inpatient hospice care to manage her pain. Scott remembers, “Kara worried it would be like a hospital setting, but the room was beautiful. She got the extra care she needed, and insurance covered it for us, which was huge.”

Kara’s dog Bandit was welcome to visit her at Agrace

Aspects of Kara’s “amazing, awesome” care that impressed Scott include RN Jessica’s care for Kara’s ostomy opening that wouldn’t heal, and her attention to Kara’s lower back to ward off pressure sores. “Everything that could have been done was done,” Scott says.

Scott also appreciated the nurses’ efforts with Kara’s pain medication. “She wanted to be alert as much as possible. They worked to keep Kara where the pain was managed but she was able to do things she still wanted to do.”

Incredible conversations, a very special bond

At night, Kara asked her nurses their thoughts on the dying process. “She had some pretty incredible conversations,” Scott recalls. “Their answers were very kind and compassionate and helped Kara a lot.”

Kara lived several weeks longer than expected after coming to Agrace. In late December, Scott returned to Agrace bearing Kara’s favorite gift—Nest candles—for Agrace staff who had cared for her. “Along with the grief of losing my wife, my partner, my best friend, I was also missing the staff,” Scott explains. “We had a very special bond with them.”

* American Cancer Society’s Cancer statistics 2024

Anne Swanson, Executive Chef

Cooking as a Caregiver: Go for Big Flavor in Small Portions

Pleasing your loved ones with food is much harder when someone’s taste sensation or appetite is altered by illness, medication or treatment.

Agrace’s executive chef, Anne Swanson, has cooked for very ill patients for 21 years. She has advice for anyone who’s doing the same at home for a family member who is perceiving flavors differently. And she wants you to know you’re not alone in this common caregiver dilemma.

“Trust yourself,” says Anne. “You know your loved one the best, and what they like to eat. If they like pancakes, make tiny ones and soak them with butter and syrup. Get pure maple syrup. It has a higher flavor profile, and that makes a big difference.

“And if it doesn’t taste good that day, remember—it’s not about you. There’s frustration in the loss of control during illness: I can’t get up, I can’t write my own checks, I can’t get in the car and go. And it’s frustrating to think you’re hungry for something and then find out you’re just not.”

Amp Up the Flavor

When someone is having trouble with the loss of flavor, amp it up.

“Flavor profiles may change daily,” Anne explains. “If you’re making something like meatloaf, taste it. Does it need salt? Ketchup?” If a food is bland, she says, add an enhancer like ketchup, Worcestershire sauce, seedless mustard thinned with water, soy sauce, Better than Boullion brand flavoring or lemon juice. Make tiny bowls of food and try different flavor enhancers in each to see if one appeals to your loved one.

Or try simple, natural flavors. “Sliced banana is very aromatic. It’s soft and it’s great for keeping constipation at bay,” Anne notes.

Serve More, Smaller Meals

“Try four or five or six small meals each day,” Anne suggests. “Make what they like, but don’t make a lot of it. You’re only going to give them half a cup to a cup each time throughout the day—literally two or three bites. If they want more, give them more, but don’t put all the food in front of them, like they used to eat. They may not feel as hungry as they used to or may worry about wasting food.

“When they do feel like eating something specific, just try it,” she continues. “It will be surprising what might taste good to them, so every day, play a game: It’s a new day. What’s going to taste good to you today? Be happy for what they may be hungry for.”

Learn more about caring for a seriously ill loved one here.

Grief Support Student Volunteers Bring Ideas, Take Away Experience

Agrace is helping train the health care workforce of tomorrow—and it’s more than nurses or doctors. Local college students volunteer to help the Grief Support Center’s Fitchburg-based staff run grief support groups, gaining relevant experience and volunteer hours required to complete their degrees.

Student volunteers Blake and Alliah play a board game with a child during Agrace’s Family Grief Support Program

“For years, Edgewood College Child Life students have helped with our Family Program,” says Jessie Shiveler, Agrace’s community grief manager. “They come with such a knowledge of children’s development and ways to support kids. And so much of it translates to what we’re doing here.” A newer partnership is with the Family Center at Edgewood, which trains students in its marriage and family therapy program. These students now intern at the Grief Support Center, too.

Agrace’s Family Program begins with a meal that brings everyone together. Afterward, while the adult participants meet separately, the student volunteers stay alongside children as they explore the Grief Support Center.

“If they go to the Art Room and draw or paint, you’re sitting next to them, doing the same things. If they’re in the Tornado Room, punching a punching bag, you’re moving, too,” Jessie explains. “That’s how we connect with the kids. It’s not so much one-on-one therapy or having conversations about grief and loss. Those things organically happen when you can provide kids the emotional and physical space to express themselves in the ways they need to.”

Blake Derby, a recent volunteer from Edgewood, says, “These kids want to play and create just like any other kid. Being in a community that understands what they are going through gives them the ability to do that. I have been so grateful to share meals with these kids and their families, hear the stories of their loved ones and develop positive relationships with them.”

If you’d like to volunteer with Agrace—in any role—please visit our volunteer page or call (608) 327-7163 to learn more.

Race for Agrace: Now Also in Janesville, Baraboo and Dodgeville

Lace up your shoes: Race for Agrace is now happening in four cities! Join us at one or all four races in the series. Choose the 5K or 1-mile run/walk, or even participate virtually. Celebrate crossing the finish line with live music, food and fun.

This event brings family, friends and local businesses together to honor, support and remember loved ones. Whether you choose to run or walk, you are supporting Agrace’s care in your community by participating in this event. We hope to see you there!

Dodgeville • Saturday, May 18 • Harris Park

Madison • Sunday, June 2 • Agrace

Baraboo • Saturday, July 13 • Courthouse Square

Janesville • Saturday, October 19 • Palmer Park

Agrace is planning to host a clinical pastoral education (CPE) student intern starting this summer. This student will meet with patients of Agrace Supportive Care, in patients’ homes and long-term care facilities, mainly in Dane County (Madison and surrounding communities and rural areas). This opportunity could be helpful to a seminarian or other CPE student who hopes to become a health care chaplain. If you know anyone who might be interested, please suggest they contact Bryce Woyak at Agrace.