Daughter brings her mom out of dementia through singing
Kathmandu, December 26
Susan Gustafson had suffered dementia for several years when her family decided she needed around-the-clock care and moved her into a memory care unit at an assisted living facility in Costa Mesa, Calif in California.
Her daughter, Nancy Gustafson, a retired opera singer and artist-in-residence at Northwestern University in Illinois, says when she visited her mom for the first time, she was devastated.
"She was sitting in her wheelchair with her head down at a breakfast table," Nancy Gustafson remembers. "I'll never forget — looking so sad and looking so lost and so confused."
Her mom answered "Yes" and "No" to questions, but Gustafson felt she didn't really understand and answered just to be polite. She says her mother "couldn't put two words together" and didn't recognize her.
She tried looking at family pictures with her, in hopes that it would stir her mother's memory.
"I'd go through photo albums with her ... and she wouldn't show any recognition of anyone," Gustafson says.
After that, Gustafson visited her mom every month. During a visit in October a few years ago, she got an idea about how to make a meaningful connection with her. She wheeled her mom next to the piano in the living room of the care facility and started to play and sing.
"Mom is singing with me!"
She doesn't remember exactly what Christmas carols she sang, but she says she included some of her mother's favorites, such as "Hark! The Herald Angels Sing," "Deck the Halls With Boughs of Holly" and "Angels We Have Heard On High."
As soon as she started, her mother started singing with her. "I caught her out of the corner of my eye," she says. "And I just wanted to jump up and run out to call my sister immediately, saying, 'Mom is singing with me!'"
Gustafson may have been elated, but her mom had a slightly different reaction. Apparently she didn't approve of her daughter's piano skills. After about 15 minutes, Gustafson turned to look at her mom, who said: "You know that's not so good."
Gustafson remembers laughing hard. "That's exactly what my mother would have said to me had she been without Alzheimer's," she says. "She would have said that 30 years ago."
Though Gustafson is a professional singer, she concedes that her piano playing isn't that great. She promised to try harder and not hit the wrong chords. They sang for another 20 minutes, and "as we finished, I turned and looked at her and she said, 'That's much better.' "
Gustafson was floored. "I looked at her and I said, 'Mom, you know we're really getting good.' "
Then she told her mom that Christmas was coming, and "if we practice enough we could go to the shopping center, put out a cup and earn some money."
Gustafson remembers her mom laughed and said "Ha ha! The Gustafson Family Singers!"
And at that moment, their lives and relationship changed, Gustafson says, because all of a sudden "not only was she relating to me and she was cracking a joke, but she knew our last name and she knew that I was related to her."
"Her vocabulary came back"
A few weeks after Gustafson and her mom sang Christmas carols together, she visited again. This time, the two of them sang with everyone else in the memory care unit. They enjoyed songs by Frank Sinatra and from the musicals Camelot and My Fair Lady. They sang for an hour and a half.
Then Gustafson and her brother and sister took their mom to the shopping mall for lunch, where they sat near the koi pond. Gustafson recalls: "She sat there and stayed connected with us verbally and said, 'What a beautiful place. What a beautiful day.' "
Gustafson was excited. "I mean, her vocabulary came back to her after she sang for an hour and a half!"
When they returned to the memory care unit, Gustafson says "she took my face in her hands and she said 'thank you for a wonderful day' and she kissed my forehead."
After that, the family hired a music therapist to visit her mother once a week. Before long, they hired a young singer to sing with her mom for 45 minutes, seven days a week. Gradually, but consistently, her mother started to communicate again. Gustafson was so moved she wanted others to experience the same. She started an organization, Songs by Heart, to help assisted living facilities start music therapy programs.
Music therapy is increasingly common in assisted living facilities. Just not common enough, says neuroscientist Kraus. Music therapy, she says, "should be a standard of care for dementia."
(Source: www.npr.org , Story by Patti Neighmond)