By Chris Stone
Eyes closed and face emotionless, Glynne Pisapia lies in a recliner in his Vista home. This is his life about 23 hours a day. Lewy body dementia has drained him of personality and most of his bodily functions.
A music therapist sitting beside him begins to strum her guitar and sing “Let it Be.” Pisapia’s lips begin to form lyrics. Then he opens his eyes.
His voice is faint, but he sings along.“It never ceases to amaze me,” says the therapist, Christine Gallagher of Seasons Hospice & Palliative Care of San Diego. “He knows every word.”
Gallagher can’t carry on a conversation with Glynne anymore, but “I get to communicate with him musically and have those shared moments and see him sing and actually get to express himself.”
Thus the essence of this music junky emerges.
Music bypasses the damaged parts of his brain and accesses his mental collection of favorite and familiar tunes during half-hour therapy sessions with Gallagher
Lyrics are almost the only words his wife, Randi, hears from his lips these days.
Pisapia, who turns 61 on Wednesday, has been in hospice care for two years as this form of dementia affecting a million Americans gradually robs him of all functions.
The former sales representative for a financial planning firm started receiving music therapy when he began treatment with Seasons Hospice. In fact, that was the deciding factor for his wife.“Music has always been a big part of his life,” she says. Indeed, Pisapia has been to about 500 concerts — about 100 of them Grateful Dead performances.
He and fellow Deadhead friends would follow the group on its tours from city to city for weeks at a time, attending every show. He said no two concerts were the same. He also attended concerts by the Kinks, Frank Zappa, the Beach Boys, Eric Clapton and Arlo Guthrie.
Said Gallagher: “We’re all human beings, and we have those needs … to express ourselves and connect with other people. … Sometimes music therapy can offer that to patients that have a hard time connecting in other ways.”
Earlier in his life, Glynne played the guitar, drums and harmonica.
So his wife sees the sessions as a gift to him.
“He gets to hear her beautiful voice singing, and that’s a release. He always felt that it was different to hear someone live.”
And despite losing his ability to express emotions or move his body, music is the spark that still brings him joy.
“Now it’s more subtle,” Randi says after a recent session. “I see that he got to sing for a while in there, where he can’t talk at all. But he can sing.”She likens him to a rose that is mostly a closed bud, but then blossoms amid therapy.
His 32-year-old music therapist says studies have shown how the brain takes in music — “that it’s actually a whole-brain process…. It basically bypasses the damaged parts of the brain… You can still sing, even if you can’t speak.”
Stroke and brain-injury victims — and also those with Alzheimer’s — can benefit from music therapy, said Gallagher, who has been a music therapist for six and a half years.
“I have countless patients who have memory loss and don’t know their own name but can sing all these songs from their era,” she says. “There’s also a huge emotional component to it, and we all have emotions and memories connected to music.”
Music provides an emotional outlet, she says, allowing patients to “get it out,” Gallagher says.
Some people think music therapy is supposed to be all happy and just a sing-along or clap-along, she says. But that’s not always the case.“Whatever needs to happen can happen, whatever the patient needs that day,” and some tears are shed.
For people in Glynne’s weak condition, it takes a lot of energy to generate any kind of response. So it has to be something really motivating, she says.
Just opening his eyes takes a special effort.
During sessions several times a month with Pisapia, she says, “there have been times when I really can’t wake him up. I can’t get him to sing along.”
He now wakens 80 percent of the time.
“I used to be able to wake him up with a little touch, and verbal, ‘Hey, Glynne,’ and he would come to, but now I have to start playing the music first to start getting his attention.”
Gallagher typically starts with whatever music the patients were listening to in their 20s.
Lewy bodies are clumps of protein that can form in the brain. When they build up, they can affect memory, movement, thinking skills, mood and behavior. It is one of the most common types of dementia, after Alzheimer’s disease, and strikes people 50 or over.
Before he was diagnosed, Pisapia worked for Pacific Investment Management Co., and lost his job during a downsizing at the firm.
Randi Pisapia said her husband took the layoff very hard and started to show signs of depression.
Though he later exhibited other symptoms of Lewy body, she was in denial about a more serious diagnosis, she said earlier this month.
She saw a large change in his personality. Where he used to be outgoing and confident and a large presence in the room, he became meek as the disease progressed.
Her denial changed when Pisapia walked off a cliff. Though he was rescued after grasping a tree branch, he failed to see the danger in his actions.
His wife said it got to the point that he couldn’t tell her what he wanted. He couldn’t answer her. But on music therapy days, she could talk to him and ask him questions. And he would answer back.
“There were times when I just wanted so bad to have a conversation with him. Please just let me have one more conversation,” she confided.“Then he would come out and say something, and I would say something back, and he would say something back to me. Like I am running and I say, ‘I love you so much’ and he said, ‘I love you, too.’”
“How are you feeling?” she would say. “I wanted to ask him everything … and then it’s gone.”
But the day came when she no longer wished for those conversations.
Pisapia was sitting in a wheelchair at the table and said, “I don’t know what to do. I can’t get out of this.” She explained to him that he couldn’t change anything, adding, “This is it, but I’m here and I love you.”
After that conversation, she wished for him not to be aware of his plight.
Nowadays, she communicates by telling him that she loves him and watching his face for clues about his needs. They have been married since 1984.
On days with no music therapy, Randi Pisapia plays meditative music and sings to him.
Singing the Barney the Dinosaur song — “I love you. You love me. We’re a happy family” — has become a bedtime ritual. That started after he began expressing insecurity and anxiety.And out of the blue, a few words emerge. Recently, she served him cherry juice, and suddenly he said: “It’s delicious.”
Regarding her work with Pisapia, therapist Gallagher said, “It’s very rewarding. I feel like almost every time I practice, I get to see some kind of result.
“It makes me feel like I am doing something important for him, offering something that can better his quality of life, and of course, in hospice, that’s our number one goal.”
Contrary to perceptions that hospice is about death and dying, “we’re all about life and living and this is a season of life.”
Seeing Glynne light up in the middle of a difficult season is fulfilling, she says.
“It makes me go home with a happy heart.”
Randi Pisapia says she has never spoken to her husband about his condition — since he can’t grasp it. She feels he is comfortable and without anxiety.
But she has talked to him about his passing.
“I’ve said to him, ‘You don’t have to hang out and stay here for me. I’m going to be OK. You’ve got to do what you need to do.’”
Randi is confident Glynne will be OK in the afterlife, where she expects to one day join him.
“I tell him all the time: I will find you, I promise.”
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