Daniel was showing signs of "terminal agitation." People at the end of life often experience this state characterized by confusion and restlessness. As a hospice music therapist I had seen many patients in this state before.
Even though I had never seen anyone die or even been to a funeral, mortality seemed to be an inevitable part of life that had always been just under the surface. And it was not going away, whether I avoided talking about it or used the words other than "death" to describe it.
Is it depressing to work at hospice? As a music therapist specializing in hospice I've been asked this question many times
When I first became a music therapist many years ago, I worked with small children between the age of 3 to 5 in a community setting where both typical children and children with disabilities attended during the day. There were about 20 of them in the class. Half of them had disabilities, such as autism and Down Syndrome, while the other half did not.
As I write this, about 80,000 Glastofarians are jumping up and down in unison to Sunday night headliners, Kasabian. I am a music therapist and they have reminded me, somewhat bizarrely, of an experience I had in a care home last week.
"I'm thankful for my illness," said Steve one day. I was shocked. Steve was a patient with ALS (Amyotrophic lateral sclerosis, also known as Lou Gehrig's disease), one of the most awful illnesses I've ever seen in my work as a hospice music therapist.
When I was first diagnosed with Parkinson's, I struggled to cope and understand the many strange symptoms that were coming at me fast and furious, as if from every direction. Unable to fall asleep at night, we tried all the usual "old wife's" remedies, but nothing seemed to work.
When I sang old tunes, such as "What a Wonderful World," Herb would calm down and smile. At the end of each song he clapped loudly, even though I told him he didn't have to do that. Through music we were able to make a meaningful connection. I thought this was a small miracle, but what followed was even more unexpected.
We sing to, dance with and buy music because it matters to us. It matters usually because of how it makes us feel, but also who it connects us with, what tribes it creates. That interconnection both within us and between us is irresistible, I suspect increasingly, because just as more of life is becoming virtual, music can't not remain real.
What makes music so important to the aspiration of living well with dementia? To put it simply, music transcends dementia. Living with most forms of dementia, even in the latter stages, doesn't affect a person's ability to enjoy music, follow it and contribute to its creation.