Why CompassionHarp Exists

CompassionHarp was born from my experience when first encountering low-income skilled nursing facilities. In the work that others and I do, we travel to many different facilities, constantly witnessing the huge disparity in the care and dignity one receives as an elder. The disparity is based upon one’s income. It’s like an informal caste system and given our culture’s aversion and fear of aging, some elders become quite neglected.

Social isolation is a profound issue at low-income skilled nursing facilities. There might be two aides for a floor with 60 beds. Residents are kept relatively safe and clean. They are fed. The staff often shows immense care and love. But there are just not the resources to spend quality time with residents.

Here is one story: Nora was blind. They got her up in the morning, dressed her and she sat in her chair alone until the evening when they undressed her and put her to bed. Her human contacts basically were meals and toileting. But then one day, there was music. Then there were smiles. Then there was foot tapping. I would come and she would say, “Oh! My friend is here!”

Add the issue of Alzheimer’s and dementia and we have a double deep isolation. It takes so much time to really reach someone with these conditions. It’s especially hard for over-worked staff. Naomi Feil, founder of the Validation Training Institute has worked for decades with people with Alzheimer’s and dementia. She names the problem very well. “We have living dead people and this doesn’t need to be.” Too often, people are left alone to retreat deeper and deeper into themselves.

Music is a shortcut, a way in, a special kind of stimulant to help awaken. We all know this. We have witnessed it. There are films made about it. There are studies and research. And we know it’s true – music can reach people and that’s why CompassionHarp exists.

This little essay started with the challenging issue of elder care in our country, but I want to end on something much different. There’s a resident at a skilled nursing facility I visit regularly. Let’s say her name is Barbara. When she came to the facility about three years ago, Barbara had dementia but was happy. Over three years, I watched her mental state erode into a kind of paranoia. Now Barbara hovers in the hallway. She’s frequently upset, saying, “ I’m afraid. Where are my children?” But if I can get Barbara to sing, she starts to focus and calm down. She might take my hand and I can sit with her. The last time I saw Barbara she was very upset and confused. She would say things like “All the fathers are gathered in the corner.” I said, “You’re upset.” She answered, “Of course, I’m upset!” When I asked, “Can I play my harp by you?” she said something with the tone of “whatever.” As I started singing My Bonnie Lies Over the Ocean, Barbara began singing with me despite her distress. Then I began to play Edelweiss. Startled, she turned to me and said, “It’s so beautiful!”

In hospice work, there’s something called “breakthrough pain.” It’s what it sounds like: pain that arises even though there’s pain management in place. Then we have “breakthrough pain meds” to address it.

I like to think of what happened with Barbara as “breakthrough beauty.” How is it that someone in the midst of such emotional and mental anguish can say, “It’s so beautiful?” How is it that an experience of beauty can “break through” crisis and confusion?

So this is what CompassionHarp offers, moment by moment, person to person. We are interrupting loneliness, confusion, and suffering of elders who otherwise don’t have the means or access, by bringing beauty, the beauty of human companionship which we offer through our presence, through harp and voice.

The neurologist Oliver Sacks wrote in his book Musicophilia, “I have seen deeply demented patients weep … as they listen to music… I think that they can experience the entire range of feelings the rest of us can and that dementia at least at these times is no bar to emotional depth. Once one has seen such responses, one knows that there is still a self to be called upon, even if music, and only music can do the calling.”

Jayne Demakos, November 4, 2019