I have a friend who is a professional musician.
He is a gifted performer – of Hank Williams-era country classics, of jazz standards, of Tin Pan Alley tunes, of blues, and folk, and rock and roll, and of sweet, charming songs of his own composition. He is a very good singer and a very good guitar player, and because of the kind of music he plays – often on the stages of clubs and bars – Douglas is very aware of his music’s rapport with his audience. He pays close attention to the reaction he gets when he plays.
“It’s that connection that can make a live performance so special,” he said to me. “That’s what it’s all about. And I have to say the best response I ever get is when I play for the Alzheimer’s folks.”
My friend volunteered to perform regularly for a group of 20 or 30. They were evenly split between male and female. They varied in age and in backgrounds. But what Douglas discovered was something that many caregivers have found to be true: music seems to have the ability to find its way around the veil of mental diseases that afflict 5.7 million people in the United States and Canada.
After one concert a frail, white-haired woman surprised everybody. “Is that a Gibson guitar?” she asked. “My husband had a Gibson guitar.” During another, a man, previously silent, suddenly requested Send in the Clowns. Standing ovations would have been no more satisfying.
Last year, in North America, 17.2 million family caregivers provided 19.3 billion hours of unpaid care to sufferers of Alzheimer’s and other forms of dementia. Often this care has been taken on without training or preparation – an occupation not motivated by innate talent or expertise, so much as by concern, by responsibility, by circumstance, by love.
There are as many stories of care as there are caregivers to tell them – and one of the privileges of ALZlive is that we can share these stories – and the practical information that attends them – with people who find themselves dealing with situations that often seem mostly to raise questions.
These questions are about diet, about exercise, about finances. They are about medication. They are about the emotions caregivers feel and the pressures with which they have to deal. There are questions about what these diseases are, about how our minds and memories work, about therapies, about tests, about medical breakthroughs. There are questions about governments, social agencies, pharmaceutical companies, medical institutions.
There is so much that so many want to know.
Some of the stories are harrowing, to be sure. But if the subject of ALZlive is a kind of darkness, it is a darkness shot through with flashes of brightness, warmth, and illumination. Many of the stories are sweet. Many are funny. Many provide the wisdom of experience and the beacon of guidance.
Like music, empathy is deeply ingrained in who we are. It might even be that the instinct to care is mankind’s most remarkable characteristic. Certainly, it’s the characteristic that ALZlive has chosen to honor and to celebrate.
“You’re right, ” my surprised friend said to the white-haired woman. “It is a Gibson guitar.” And to the man who had made the equally unexpected request, Douglas replied, “Yes, I do know Send in the Clowns.” Then, making the kind of human-to-human connection that caregivers so often hope for, he played it.
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