Alzheimer’s Anthems, Sung by Those With and Around the Disease

This one-of-a-kind show was created especially for the Giving Voice Chorus

“There is no wrong in this room.”

These are the soothing words of Jeanie Brindley-Barnett, a seasoned director, to the portion of the Giving Voice Chorus rehearsing on a Wednesday afternoon in Minneapolis. Brindley-Barnett is no stranger to working with choirs and individual musicians, but this one is different.

Giving Voice is a choir made up of people in the early stages of Alzheimer’s and their caregivers. Since 2015, 170 members ages 30 to 99 have put on concerts in the Twin Cities. It’s a unique model being emulated worldwide. Most recently, Giving Voice took on a new challenge: learning and performing music created specifically for them — and created by them.

“We weren’t sure how much new music could be learned and retained, but I had a feeling that if the music was presented in the right way and spoke to their hearts and emotions, we could start introducing new pieces,” Brindley-Barnett said. “Just like anybody at any age learns, we learn.”

With the help of a grant from the American Composers Forum, Giving Voice was able to hire a poet and a composer to collaborate with the chorus members in crafting a set of new songs about the singers’ experiences living with, and caring for people with, Alzheimer’s. The results are breathtaking and came to life with a June performance — Love Never Forgets — at the 1,100-capacity Ordway Center for the Performing Arts in St. Paul, Minn. A song from that one-of-a-kind show is below.

Striking Personal Chords

One of the nine original Love Never Forgets pieces is titled “The Ballad of the Dinghy,” and it stands out as particularly significant to everyone involved in the chorus. Poet Louisa Castner crafted the lyrics directly from a metaphor shared by a chorus member named Janet who cares for her partner with Alzheimer’s. Janet compares being a caregiver to being a small boat — a dinghy.

“We were talking generally about what the choir means to them, and Janet said, ‘The thing about the disease is it’s really isolating,’” Castner recalls from a story circle in the initial phases of Love Never Forgets. “Janet said, ‘A lot of our friends have kind of dropped off. It’s kind of like living in a little boat, a little dinghy. You’re really fogged in; you can’t see what’s happening. And all of a sudden, the fog lifts. The sky comes out, and we realize we’re in this harbor, and there’s all these other little boats, and it’s our friends in the boats, and we know them. That’s what it’s like to come to this choir.’”

Both Castner and Victor Zupanc, the composer, had parents with Alzheimer’s, making them perfect candidates to take the inspiring and diverse stories of navigating life with and around the disease and synthesize them into beautiful music and lyrics that proved meaningful for both the chorus members and a greater audience.

“We found it to be a very, very personal project,” Castner said. “How courageous and honest it was for the folks in the choir who we got a chance to meet with over a period of several months. How wonderfully generous of them to tell us their stories and to share the hard part as well as the joyous, funny things that keep them going.”

A Weekly Respite for Families Dealing With Alzheimer’s

For one couple in the chorus, life is all about finding joyous things to keep them going. Kate Saumweber faces two challenges: living with multiple sclerosis and Alzheimer’s. Her husband Bob Saumweber is her primary caretaker, and together they sing in Giving Voice.

“What this has meant to us is fun. No matter how difficult, we have fun,” Bob said. “It gives us respite during the week. I know for many members here, this is their respite. It just makes such a difference in our life — the music, the singing. We’re hoping this concert at the Ordway might spread beyond our families coming to the concerts. We hope that more people will know about us so more choirs can be formed.”

Catherine Anderson continues to participate in Giving Voice despite the death of her husband, who had Alzheimer’s. She feels drawn to connecting with people who have Alzheimer’s and their caregivers.

“Caregivers come in, and you will know they had a hard time getting here, because nothing comes easy at that point,” Anderson said.

She has bonded closely with many of the chorus members, including the Saumwebers.

“We were told there was a grant to have a poet and a musician interview us and make songs for us. That was unbelievable — just that,” Anderson said. “Then they told us we were going to be singing these things at the Ordway. You could have heard a pin drop in the room. We were blown away.”

Being Here Now

Hearing Giving Voice, you wouldn’t know it was made up of those facing the uphill battle of Alzheimer’s. In rehearsal, Brindley-Barnett has high expectations and speaks to the chorus with encouraging but clear directives. And they sound good — really good. The chorus members listen to recordings of the songs at home to train their ears, and at rehearsal read along with the music or just the lyrics.

“Living in the moment, we are here,” the choir sings with powerful gusto.

“I hope we can release any old thoughts or stigma regarding those who get this diagnosis,” Brindley-Barnett said. “They are still part of today and important in our lives and have so much to contribute. To think that not a pill is going to bring you to that present moment, but hearing that song… the power of music is transforming at any age and at all ages.”

Grace Birnstengel, writer at Next Avenue in a black shirt and pink background.
By Grace Birnstengel
Grace Birnstengel is a reporter, writer and editor for Next Avenue where she focuses on America's diverse experiences of aging. She recently concluded an in-depth series on America's first generation aging with HIV/AIDS.

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