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Simple Game Unlocks X’s and O’s of a Patient’s Silence

Hanna & Karissa smiling

A game of tic-tac-toe led Hanna, social worker, and Karissa, nurse case manager, to a better way to communicate with their patient

In one of the long-term care facilities where Agrace’s Karissa Webb and Hanna Williamson see hospice patients, there was a puzzle. A patient named Dan* seemed trapped in silence due to a form of dementia.

“He couldn’t articulate his thoughts,” says Karissa, Dan’s nurse case manager. “He often repeated a few words or phrases, like ‘go to my room’ over and over. He couldn’t respond verbally to questions, and I could see this left him isolated. For a while, it seemed like that would be the way things would stay.”

Then Karissa noticed something intriguing. 

“He was coloring quietly. He was calm and smiling. I’m not sure why, but I drew a grid for a game of tic-tac-toe,” she says. “We started playing, and at first, it was a casual couple of games. But it soon turned competitive. He was surprisingly skilled and started winning. He started ‘schooling’ me—much to his amusement. And in that moment, we made a connection.”

Karissa told Hanna, Dan’s social worker, about the breakthrough, and they both wondered what else Dan could do.

When Hanna next visited, she also played tic-tac-toe with him. “I noticed that he would write down which one of us won the game. The other side of the paper we were using was a form. He saw this and started to fill it out with all the correct information. He even worked out the correct date,” says Hanna.

Karissa and Hanna soon developed a list of prompts and questions to help themselves, and others, connect more with Dan. The man who had once seemed unreachable had a real awareness of the world around him.

“Unlocking a way to communicate with him was incredible,” says Hanna. “It helped us all care for him better. It reduced frustrations for him and his caregivers. And people could see him as the smart person he was.”

“He began a new lease on life,” adds Karissa. “His daughter told me that he used to be an accountant and had a mathematical mind. After hearing about our breakthrough, she brought him puzzle books, some with complex math problems. He spent hours poring over them and clearly had a sharp mind. Even though it had been trapped away for a while, it was great to see that it was still vibrant and alive.”

*The patient’s name has been changed for privacy.

 

Agrace has launched a new Dementia Support service line to help families facing dementia—long before they need hospice care. See below for our upcoming “Learning to Live with Dementia” courses and more about the Agrace Adult Day Center in Madison.

 

Hello, La Crosse! We’re Bringing Our Care to More of Western Wisconsin

Photo of La Crosse neighborhood street with trees and bluffs at rightAs a reader of this newsletter, you’ve likely had a family experience with hospice care. Or perhaps a friend, neighbor or colleague had one, and you donated to Agrace in their memory. Through these encounters, you’ve seen how grateful people are to have access to exceptional end-of-life care and grief support.

High-quality hospice care should be a choice for everyone who is medically eligible for it. Agrace has gradually made that possible for more and more Wisconsinites over the past 12 years by expanding our service “footprint.”

In July, we’re opening an office in La Crosse, Wisconsin, a city nestled between a great river and a grand bluff. If you have friends in La Crosse County, please let them know Agrace will be available when their loved ones need end-of-life care (the same goes for Milwaukee County, which we began to serve in January).

As we grow, we balance the efficiency of serving cities with our desire, as a nonprofit, to also serve rural areas where people have fewer choices for in-home hospice care. Please know that we are careful stewards of our resources and your donations—and we continue to value people over profits.

Lynne Sexten photo

 

Lynne Sexten
President & CEO

Ask Us about Care in La Crosse County

 

Like Tom, Veterans May Qualify for Financial Aid to Attend our Madison Adult Day Center

Tom dances and sings at the Adult Day Center.

Tom enjoys dancing and singing karaoke at the Adult Day Center

When there’s dancing, balloon volleyball or even impromptu karaoke happening at the Agrace Adult Day Center in Madison, Tom Ellis is likely joining in. He has attended the Day Center several days a week for more than a year.

“The difference in Tom’s life is significant, because he is more stimulated and happier with all of the activities and the companionship.” Tom’s wife, Sally, says. “I am content knowing he is in the hands of caring staff members and volunteers. It gives me peace of mind and the space to take care of myself.”

Although most Day Center clients pay out of pocket, financial support for U.S. veterans may be available through the Madison VA. An army veteran, Tom was the first Adult Day Center client to receive VA funding to help pay the cost of attending this special place.

If you know a veteran with dementia who would benefit from attending Agrace’s Adult Day Center, please encourage their family to contact the VA to ask about eligibility for funding.

Learn More
 

‘She Gave Me Hope’

Sue Finds Purpose through Service

Sue smiling

When Sue Hughes got her first volunteer assignment with Agrace, it seemed simple: help a 100-year-old, nearly blind patient do her laundry. What Sue didn’t expect was a lesson in bed-making, the chance to share stories with someone new—and hope.

A retired nurse, Sue is the oldest of eight children. She has spent her life caring for others. That instinct grew even stronger after she lost her wife of 40 years in 2020. Grieving, and isolated by the pandemic, Sue found comfort through Agrace’s grief support groups. When her group ended, she decided to begin a new chapter as a volunteer.

Doing a few loads of laundry quickly became something more. Each week, Sue provided the patient with companionship while the clothes were washing. As the two spent time together folding towels and matching socks, Sue learned how the patient had organized her home to live on her own. Sue recalls, “I knew if she could do that, then I could get through my grief.  She gave me hope.” The patient also gave Sue a lesson on the “right” way to fold the corners of bed sheets.

Since joining Agrace, Sue has volunteered in many ways. She has visited patients in their homes and in long-term care facilities and co-facilitated the same grief groups that first connected her to Agrace.

Volunteers like Sue improve the lives of our patients.  Visit Agrace.org/Volunteer or call us at (608) 327-7163 to join Sue in supporting our mission.

 

 

 

It’s Always a Good Time to Talk about the Future

Mary Severson

Mary Severson

June is National Alzheimer’s & Brain Awareness Month, a time to reflect on the impact of brain-related illnesses like dementia. If someone you love is facing this illness, it’s best to plan as early as possible for future health care and financial decisions. These tough conversations are a loving gift you can give yourself and your family.

“Involving your loved one with early-stage dementia in planning for their future lets them share their wishes, and it helps you know how to honor them as their disease progresses,” explains Mary Severson, Agrace dementia resource specialist. Here are some ways you can start planning:

  • Visit Agrace.org/Dementia or call (800) 553-4289 to learn about Agrace’s dementia care consultations and education series.
  • Visit Agrace.org/AdvanceDirectives to learn how to ensure their choices and wishes for future medical care are known and documented.
  • Document choices and wishes for your estate at FreeWill.com/Agrace, where you can learn about and create a revocable living trust or legal will in just 20 minutes—for free.

As you create a will, please consider making a legacy gift to Agrace to support dementia care. There is a clear need for better nonprofit care options in all the communities we serve.

 

Tough Conversations:

Father with arm around son's shouldersHow to Tell Children Sad News

Telling children difficult news is just that—difficult. As adults, we want to protect kids from confusion and pain, so we may be tempted to withhold news about a diagnosis or a death.

Agrace grief counselors believe that children deserve to hear the truth—and to hear difficult news from a trusted adult. So how do you start?

  • When sharing information for the first time, use the concrete words “dying” or “died” to reduce the chance of misunderstanding. After that, take the child’s lead in choosing your words or phrases.
  • Delivering this news may sound like this: “I have some sad news to share. Your grandpa died last night.” Wait for the child’s response or questions, and then respond accordingly.
  • Answer their questions as truthfully as you can; if you don’t know the answer, say so. Explain that sometimes we don’t have all the information we’d like, and that can feel upsetting.
  • Let children know that nothing they said or did—or didn’t say or didn’t do—caused the death.
  • Often, children process their feelings through play. Don’t force conversation; instead, give them plenty of chances to talk and a variety of opportunities for play.
  • Expect ongoing questions; such big news is not generally a “one and done” conversation.

Contact Agrace for resources and support as you navigate these hard conversations with children. You can reach the Agrace Grief Support Center at (608) 327-7110. 

Recommended Articles, Books & More
 

Join Us for ‘Learning to Live with Dementia’ Classes

Life can be so uncertain when you are caring for a loved one who has dementia. To help you get your bearings, Agrace offers an education series called “Learning to Live with Dementia.” The one-hour classes listed below are open to anyone in the community who wants this guidance.

  1. Legal and Financial Decisions: Topics to talk about with your power of attorney for health care; July 1 at 11 a.m. CDT
  2. Facility Support When You Need It: How to find the “right” facility, deciding when to move; July 17 at noon CDT
  3. Living at Home with Dementia: Home safety and modifications, and other resources to support living at home
    as long as possible; July 29 at noon CDT

You may attend in person at Agrace in Madison or online, using Microsoft Teams.

Learn More or Register

Questions? Contact us at DementiaSupport@Agrace.org or (800) 553-4289.

 

Upcoming Events

assorted playing pieces, tiles and dice

July 24: Family Game Night, Agrace Grief Support Center, Fitchburg. For families with school-aged children who are grieving the death of a person. Pizza and games provided (parents must stay). Call (608) 327-7110 or email us for details.
Email for Details

 

 

Agrace's inpatient unit in 2000

August 9: Gala Under the Stars, Madison. Join us to celebrate the 25th anniversary of the Don & Marilyn Anderson Hospice Care Center, the first phase of our Madison campus. Featuring dinner, cocktails, tours, a silent auction of works by local artists, stories about Agrace’s care and more.

Learn More or Purchase Tickets

 

 

Foursome posing on green

September 8: Agrace Golf Open, Oregon. It’s the 30th anniversary of this popular event at the Legend at Bergamont.  Join our Title Sponsors, Strand Associates and Capitol Bank, in supporting this event—and Agrace’s care in the local community.

Round Up your Foursome & Register

 

 

3 women cross the finish line of the race with their arms up

October 18: Race for Agrace, Janesville. This 5K or 1-mile run/walk at Palmer Park brings family and friends together to honor and remember loved ones, and to support Agrace’s local care. Mark your calendar and start building your team!

Registration Opens July 14
 

Agrace Donor Survey

Will you take a few minutes to complete a survey? Your answers will help us better understand your perspective as one of Agrace’s supporters. (This is the same survey that was mailed with our summer newsletter, so there’s no need to complete both). Thank you!

 

Your Words of Thanks Inspire Agrace’s Staff

Families often tell us how much the kindness of Agrace Hospice Care’s staff meant to them during their loved one’s final days. A family member of a patient recently used our new Honor a Staff Member web page to tell us how an Agrace nurse, Ines, brought relief for his mother: “Ines was there for us on the last day of my mother’s life. She was invaluable in helping relieve her pain, and when it became clear that Mom was passing on, Ines was a comforting presence. Thanks, Ines! We’ll always have a place for you in our hearts.”

Messages like this remind our care teams just how much their challenging work means to the people they serve. If someone at Agrace took extra care of your family, you can share your appreciation or make a gift in their honor.