Winter 2023/24

‘Our World Was Tipped Upside Down’

Supportive Care Helps Families Face Life-altering Diagnoses

When we hear hoofbeats, we think of horses—not zebras. When Bob, a long-haul truck driver, began to have trouble breathing on trips to humid Atlanta, he thought of asthma—not bulbar onset ALS.   

Kathy, Bob and Buddy

After consulting his primary doctor and having several fast-tracked tests and specialist visits, Bob and his wife, Kathy, were shocked at the diagnosis of an aggressive form of amyotrophic lateral sclerosis that has affected Bob’s diaphragm muscles and breathing. “The kind we’re dealing with is not the ALS that starts in the limbs,” Kathy explains. “It’s not something we had even the wildest thought of.”

Bob adds, “They have no idea how people get it. My doctor told me I’d probably had it for six months, and I’d probably live a year and a half.”

“Our world was tipped upside down,” says Kathy. “We needed people to talk to.” She decided to look for a palliative care program and, having had experience with Agrace Hospice Care, she called for information. At the time, Bob was not eligible for hospice care, but Agrace Supportive Care was a good fit.

Agrace Supportive Care, which Agrace has offered for 10 years, consists of consultations with palliative care nurse practitioners like Nicole Klaas. These in-home visits explore what patients and their families need to learn about having a life-altering illness, their goals and treatment options, and ways to manage their symptoms and stress.

Nicole Klaas, NP

‘We just felt better, more relaxed’

Bob told Nicole he wants to be able to go to his grandkids’ soccer and baseball games and is determined to do as much as he can for himself while he still can. He prefers not to have certain treatments that would leave him unable to enjoy those things.

Nicole, Bob and Kathy discussed medications that Bob may eventually take to help with his breathing. They talked about how his diet may need to change over time to prevent choking. They also discussed what the future may look like with this type of ALS.

After the visit, Nicole coordinated with Bob’s primary doctor, specialists and other caregivers, so everyone is working together to support him and Kathy.

Bob says after his visit with Nicole, “We just felt better, more relaxed. She’s given us advice on when hospice might have to kick in, because that’s what we need to know.”

Nicole plans to visit Bob about every four weeks. She will continue to watch for signs he would benefit from other services or support, including hospice care, and make referrals for him.

Kathy summarizes, “It takes a very special person to listen—and explain how your program can be helpful. Nicole’s giving us her time. That makes a huge difference in this journey.”

Thanks to the strength of two Baraboo EMTs, Betz got to see the theater from above

We aim to lift our patients’ spirits, but one Agrace Hospice Care patient, Betz, was literally lifted last summer as part of a Wish. Arie, a volunteer who met with Betz, learned of her desire to see renovations completed at the Al Ringling Theater in Baraboo where Betz had worked. Unfortunately, some of the theater couldn’t be seen from downstairs, and the building does not have an elevator.

Betz (r) with Arie, her
companionship volunteer

The Agrace Wish program helped arrange transportation for Betz. Her Agrace nurse, Jayme, enlisted the help of two Baraboo EMTs, who were able to safely lift Betz up to the theater’s upper floor in a special wheelchair. Her social worker, Leslie, reports, “Betz was beaming and chatting the whole time and handled the lift up the stairs like a champ!”

Betz was thrilled to be the first usherette at the Al Ringling theater when she was in high school, and says she felt the same thrill to see the updates and renovations.

The staff of our Baraboo office are celebrating 10 years serving Sauk County and the Baraboo/Wisconsin Dells region. Thank you for supporting us in this area!

Music Volunteers Strike the Right Note at Agrace

Visits Bring Calm to the Memory Care Suites, Inpatient Unit and Adult Day Center

Volunteer Mary Clemons

When music engagement volunteers Mary Clemons and Lisa Kinney bring their harps to Agrace each week, their beautiful tones float through the hallways, landing lightly on every patient, visitor and staff member.

A church musician, Mary has volunteered at our Madison inpatient unit since 2005. Her repertoire is a little of everything: Irish, folk, 30s, 40s, movies, Broadway, classical, religious, chants, oldies. She explains, “The great thing about the harp is that you can play a simple arrangement to wonderful effect.”

“I am so very honored to have the opportunity to play for the patients, staff and visitors at Agrace,” says Lisa, who began volunteering this past July. She played her harp in long-term care facilities before moving to Madison recently. “The music is soothing and seems to be calming. Sometimes the music can take you away from the reality of a situation. That is probably the best part.”

Rekindling Connections to Music

“I will usually spend some time in the Memory Care Suites, then move to two other places in the building,” Lisa explains. “I have a few ‘regulars’ in the Memory Care area who will hum along or interact with me, talking about their prior lives that may have involved music or playing an instrument.”

Mary also volunteers at the Agrace Adult Day Center in Madison. She says, “I mostly play piano and guitar there; it’s nice to use different musical muscles. I love that venue because there is more participation.”

She adds, “If it does nothing else, I hope the music helps people to just breathe and find a moment of peace.”

If you have a special talent to share as an Agrace volunteer, we have people who would love to meet you. Please visit our volunteer information page or call (608) 327-7163.

Agrace’s leaders celebrate our new certification from the American Heart Association

In November, Agrace earned Palliative/Hospice Heart Failure certification from the American Heart Association. The honor recognizes that Agrace’s hospice and supportive care patients who have heart failure are receiving high-quality care, and that our clinicians are following current standards aligned with American Heart Association guidelines. We are one of six organizations nationwide to receive this certification, and the only one in Wisconsin!

Karen Nissen-Boryczka, Agrace’s cardiac care nurse specialist, says, “What stands out to me in this process is the willingness of our staff to learn and adapt care to manage symptoms of heart failure.”

Learn more about our Advanced Cardiac Care program here.

If you plan to start the new year with some closet cleaning, Agrace’s thrift stores can make it easier—with our Pack Up Pick Up service. Our team will come to your home in Dane County or Rock County, pack up the items you want to donate, then take them to one of the Agrace Thrift Stores for you!

We may not take everything you have to donate, but we do accept gently used, resaleable items, including art, area rugs, books, collectibles, clothes, accessories, dishes, furniture, home décor, jewelry, lamps and linens.

To use this service, make an online request here, or call and leave a message at (608) 640-0139.