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Still there: Alzheimer's has ravaged his mother's memory, but music brings her back

Adam Kaye and his mother, Marti Kaye, spend every Sunday together. Adam normally plays some of her favorite songs on his guitar, with Marti whistling or humming along. But he recently had shoulder surgery and won't be able to strum a guitar for a while.
Dustin Jones
/
NPR
Adam Kaye and his mother, Marti Kaye, spend every Sunday together. Adam normally plays some of her favorite songs on his guitar, with Marti whistling or humming along. But he recently had shoulder surgery and won't be able to strum a guitar for a while.

Eighteen years ago, Adam Kaye was hosting a family barbecue at his home in Del Mar, Calif., when his mother, Martha Kaye, broke the news. At 71 years old, she realized that she was becoming forgetful. While working in the kitchen, she would ask herself out loud, "What am I doing?" Martha — better known as Marti — started calling everyone "Darling" because names had begun to slip her mind.

Adam had suspected something was wrong. So when Marti told him she had Alzheimer's disease, the diagnosis didn't come as a surprise. "But that didn't mean that it wasn't very difficult to hear," he says. "It was something upsetting for my young daughter, who had never seen her grandma cry at the time."

Well aware that Alzheimer's is an irreversible disease, a "one-way street," Adam didn't feel the need to bury himself in research. He had two young children to raise, and his father, Peter Kaye, had already decided he would be the one to care for his wife of 50 years.

But almost a decade passed, and Peter was diagnosed with bone cancer in 2014. He soon became unable to tend to Marti's needs, and the family decided to bring on professional caregivers. When Peter passed away in 2015, Adam and his older brothers, Loren and Terry Kaye, had to sell their parents' house to help pay for their mother's care.

Marti had always supported Adam in life's endeavors: buying him guitars, driving him to music lessons and helping with school. Watching his mother deteriorate was painful, Adams says, seeing her go from being the woman who would light the room to a shadow of her former self. And when his mother had to leave her home and move in with full-time caretakers in the summer of 2015, he was determined to be there for her.

As a lifelong musician, Adam has always enjoyed playing for his mother. Before the onset of Alzheimer's, Marti would sing along, and the pair would perform as a duet for family and friends.

So every Sunday for the past eight years, Adam has packed his guitar and made the short drive to visit with his mother. Once there, he plays some of her favorite songs: tunes from the metaphorical pages of the Great American Songbook, like 20th-century rock standards and folk and jazz tracks. When he plays for her, he sees a glimpse of the woman he has known his entire life.

A musical bond between mother and son

Back in February 2019, Adam posted a video to his band's Instagram account of him playing "Blue Bossa," by Kenny Dorham, for Marti. Recording their performances since then makes their time together more fun, he says, and the videos give him something he can look back on and smile. They also seemed to strike a chord with his followers, especially those with a loved one with Alzheimer's.

"Some of the posted comments touched upon how these videos and the togetherness brings tears to their eyes and makes them think of their own loved ones and their own stories and what they go through," Adam says.

He has since posted more than 100 recordings of him and Marti performing together.

"That is why I feel really good about doing this. I know that Marti, with her forever benevolent heart, would want to do anything ever within her means to help people."

At first, Marti would sing along with Adam. But as the disease inevitably progressed, the words to her favorite songs began to slip away. By 2018, her speech was limited to one-syllable words that made little sense.

But when the lyrics were long gone, Marti began to whistle along as her 57-year-old son strummed the chords to the songs she'd always loved — like those of the Beatles, jazz legend John Lewis and Elvis Presley.

Somehow, she still knows the melodies to the songs she had listened to 70 years ago.

"Alzheimer's disease has crushed Marti's memory. At this stage, she cannot form a word. But somehow the pathway to musical melodies remains clear," Adam says. "And it is along this pathway that she and I are able to communicate."

The link between music and memory with Alzheimer's

When Marti was first diagnosed, Adam visited the Alzheimer's Association — the world's leading nonprofit that studies the disease — to look into what care options were available for his ailing mother.

But he was unaware of the link between music and memory when he first started making his weekly visits to play for Marti eight years ago. However, he noticed early on in his visits that when he played a song from her past, her eyes would light up, and she would smile and try to sing along with him. Adam says some visiting professionals were also unaware of that connection and were shocked when they listened to the Marti and Adam show.

"I've seen some visiting caregivers who didn't know that we did this ... turn their heads, amazement in their eyes, when she's doing this, like, 'What am I hearing? What? How is she doing this?' Because these same caregivers know the severity of her condition and know that she can't do anything," Adam recalls. "They were dumbfounded when they would hear her whistling along to a tune."

Carmela Abraham, aprofessor emeritus at Boston University's School of Medicine, has studied Alzheimer's disease for over 30 years in hopes of better understanding the disease and developing treatment options. She says 6 million people in the U.S. have the incurable and irreversible disease, which makes up approximately 70% of all dementia cases.

The disease is a heartbreaker for everyone involved, she says. That begins with the patient, who has to come to terms with the fact that their memory and cognitive abilities are in decline.

"But after a while, they don't suffer anymore. They have no pain, and they just don't know what's going on. They don't recognize their family members, their loved ones, so they really don't suffer," Abraham says. "They can live like this [for] 10 to 15 years. And the suffering, which is both emotional and then financial, is on the family."

The disease affects short-term memory in the beginning, leaving long-term memories intact for a period of time. That's why music from Marti's past has stuck with her for so long, Abraham says.

"If the person, in the past, knew certain tunes and they hear them again, so such long-term memory can still be there," she says. "They can recognize the tune and enjoy it and even maybe smile, you know, give a sign that they are still there."

According to a study from Northwestern University, many Alzheimer's patients can still recall melodies from their past because the cerebellum, where musical memories are processed, is affected later in the disease. This allows patients like Marti to recognize and enjoy the music they've always loved, even after they can no longer speak.

Enjoying what little time is left

A series of new treatment options in 2023 has shown promise for the millions of Americans with Alzheimer's. This July, the Food and Drug Administration gave full approval for Leqembi, the first drug shown to slow the disease. And a new experimental drug called donanemab, which was found to slow Alzheimer's progression by about 35%, has been submitted to the FDA for approval. A decision is expected by the end of 2023.

However, both of these new drugs can only slow the disease, not stop or reverse it.

And unfortunately for Marti, many of today's disease detection and treatment methods weren't available when her doctor told her she had Alzheimer's back in 2005. Adam says his mother participated in a clinical trial through the University of California San Diego a few years after she was diagnosed, but nothing ever came from it.

Ultimately, family members have decided to make the most of their remaining time with Marti, instead of burying themselves in research and additional studies. In 2013, the whole family made a trip to Yosemite National Park, the beauty of which Adam says brought Marti to tears. And Adam continued to host family barbecues at his home in Del Mar every Sunday until his father passed away in 2015.

As Marti's condition advanced, Adam's visits replaced the Sunday barbecues, but the time they spend together is still cherished. They performed together at a holiday party at the Del Mar Civic Center in December 2021, their first and last show together.

Marti had some teeth removed 10 months ago, so her whistling isn't what it used to be. And Adam had shoulder surgery in late August, so he won't be able to strum a guitar for a while. But he still carves time out of every Sunday to see his mom — the best part of his week.

"It gives me a lift every time. I love my mom so much. I miss her. I miss her great, loving, caring heart, and I miss her ability to think and I miss her ability to remember and I miss how sweet and unconditionally loving she always was for me, especially during times when I might not have deserved it," he says. "So it means everything for me to be able to bring her a little bit of joy with my guitar and my visits and playing along together."

Copyright 2023 NPR. To see more, visit https://www.npr.org.

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Dustin Jones is a reporter for NPR's digital news desk. He mainly covers breaking news, but enjoys working on long-form narrative pieces.