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On Blindness, Alzheimer's and Love

March 19, 2018

By Jan Klingberg

As pianist Heidi Musser accompanied the choristers in their singalong, her blindness and their memory challenges melted away. The singers are participants in the House of Welcome Adult Day Services (HOW) program; Heidi is a volunteer musician. Her mother, Erika Musser, enthusiastically led the group in patriotic songs and old-time favorites, like “America the Beautiful” and “You Are My Sunshine.”

Though Heidi was blind from birth, her parents empowered her to be invested in life, and she has overcome numerous challenges. Both she and her mother also have been relentless advocates for individuals with vision disabilities. They have helped open the eyes of policymakers and educators about the importance of creating opportunities for students with disabilities to fully participate in education and athletics. Indeed, as a classically trained pianist, college graduate, decorated triathlete, and mentor to children in piano and Braille, Heidi also has led by example.

Starting at age nine, Heidi learned to play piano under the guidance of Mary Sauer, former principal keyboardist of the Chicago Symphony Orchestra. She was well equipped, therefore, to respond “yes” to the suggestion from fiddler and community volunteer Margaret Sents ten years ago that she share her talent with HOW day program participants. 

Heidi’s visits now have taken on new meaning. Through the years, she became familiar with the benefits of HOW activities as she listened to participants sing, gently rib each other, and call out names of songs. So when Heidi’s father, Fred, was diagnosed with Alzheimer’s disease in 2016, she and her mother almost immediately felt that HOW could be a resource for their family. With Fred now a participant in the day program and seeing firsthand how much he enjoys his hours there, Heidi and Erika sing the praises of the program. Heidi commented, “He loves being part of the friendly environment and has found friends who accept him and love him just the way he is.”

The day program is a place where individuals living with memory loss from Alzheimer’s disease and other dementias feel valued and respected. Skilled professionals, along with a cadre of volunteers, provide therapeutic programming five days a week. “Every activity can be therapeutic,” said Cynthia Phon, LCSW, director of HOW, “whether it’s drawing, singing, baking muffins, gardening or eating lunch together.” Music activities and music therapy, for example, help facilitate social interaction and can tap into memories of pleasurable experiences or cherished loved ones. Programming is based on clinical and research-based techniques and addresses the physical, emotional, cognitive and social needs of participants, whatever the degree of memory loss.

Support for participants’ caregivers also is a key component of HOW programming. For instance, Clinical Manager Mary Lu Osterberg, LCPC, facilitates a monthly support group for family members. Erika expressed gratitude that staff has been her teachers as she navigates the challenges of being a more understanding caretaker for Fred. With their loved ones participating in meaningful activities in a safe environment, caregivers like Erika also can count on a regular break from caregiving duties.

When Fred was diagnosed with Alzheimer’s, the Musser family wanted him to participate in the day program. “But we were already shadowed with worries about the financial burden of caring for him,” said Erika. “By learning more about the program and working together, though, this weight has been removed.” According to Cynthia, misperceptions persist that the day program is pricey compared with other types of care. “It’s actually less costly than home care on an hourly basis,” she noted. “And what you’re getting is so different: stimulation, creative activities, socialization and family support.”

To make the day program more accessible, North Shore Senior Center has a generous sliding fee scale for people with limited income and assets. In addition, because HOW is CARF-accredited, participants can use long-term care insurance, depending on the coverage. HOW also is an approved adult day services provider through the U.S. Department of Veterans Affairs (VA). Though the program is fee-for-service, the daily fees do not cover the full costs of HOW. So the Center relies on contributions to subsidize the program, in fulfillment of the mission to provide accessible and high-quality services to older adults in the community.

Erika is convinced that love grows as it is shared, and it returns to the giver in abundance. Her daughter exemplifies this. “My biggest strength is being able to give,” Heidi said. As she now gives her gift of music to older adults with memory loss she, in turn, is experiencing kindness and acceptance. She also knows that her dad has been warmly welcomed into the secure and supportive environment of the HOW day program and is engaged in activities that reinforce who he is—his memories, his skills and his values.