Music In Her Hands

I went to visit my mom the other day. She is an ex concert pianist, a child prodigy who quit when she was young. Later, she went back to school, got a Masters in Composition, and until a few years ago, was the oldest professor at work in the New York State university system. Now my mom has late-stage Alzheimer’s. I manage her care long distance. Because she is a Holocaust survivor who is still very paranoid about strangers--she calls her nurses “uniforms”--my sisters and I have decided to keep her in her home, until the end. 

The symptoms of late-stage Alzheimer’s are terrible. My mom has them all--incontinence, inability to dress, walk, or do personal care unless assisted, confusion about family (she can kind of recognize a familiar face), difficulty breathing. She’s mostly deaf and monosyllabic, getting into a rhythm of “yes” or “no”--it hardly matters which--when questioned. Last year, I spent listening to her crying, at 3 AM, in Yiddish and German--she thought I was her mom and she was leaving me to die. By now, her surface personality is gone. But paradoxically, she’s nicer than before. And when she gets into a rhythm of “Thank you very much,” she would be welcome at any social event on the planet.

As I do whenever I visit, I checked her home and arranged repairs. Then I tested her functioning. The science of Alzheimer’s began with a lecture in 1906, describing a woman whose behavior was noted, and whose brain was later dissected and described; the first publication of a scientific article about Alzheimer's came 100 years ago, in 2011. I’m setting down these notes in the hope that they can help you, my neighbors, and because there’s no understanding a disease, without a sense of the person who has it.

My mom and I sat in her living room, on her plastic-covered sofa. She recognized me--kind of. If I’d told her I was either of my sisters or my daughter, she might have said “Yes.” We discussed her friends and her husband, who died a few years back. I couldn’t tell if she recalled her friends, but she misses her husband severely.

Then, I read to her--the Dictionary of Musical Biography. I showed her photos, she scanned the captions (which proved she could still read), and she pretended to recognize the subjects. We labored through the entries for Artur Rubenstein (“a very great performer”) and Mozart (“not as great as Bach”).  As Mozart, in a letter to his father, was quoted, arrogantly disparaging some “inferior” girl pianist, I asked my mom what she thought of Mozart’s attitude. 

“What do you think?” she echoed.

I hesitated, then decided to be honest.  “He’s a little b--ch,” I said.

Her mental gears seemed to creak. Then she chuckled. It was the first time she’d cracked a smile. And this was the mom who washed my mouth out with kosher soap when I was small, for asking her the meaning of a four letter word.

Finally, we sat down to play the piano. I discovered that her capacity for criticism is intact. If she’s lost her vocabulary, she can still wince and groan in dismay.

Her caregiver and I sat her on the bench, put some Bach music on the piano and turned to page one. My mom placed her hands upon the keyboard. She frowned in concentration. Her hands pressed notes, stumbled, and pressed again.

“Isn’t it lovely?” said the caregiver.

It was, but the music on the page did not match the music in my ears. My mom was faking reading the notes. Since my last visit, she’d lost her understanding. But her hands were strong. The music had left her brain, but not her hands. Fragments of beauty poured forth, in the key of C, then in A minor... I recognized the bits. An ornament from Vivaldi. A lento from Chopin, a Mozart arpeggio, a crash of Beethoven, a liquid cry from Liszt, all shuffled together, into a sad, strange music of her own...

One tenth of Americans are affected by Alzheimer’s (patients and caregivers). This means that in Santa Monica, which has approximately 87,500 residents, 8,750 are suffering--many without help. Alzheimer’s is the sixth leading cause of death in America. The other five are decreasing in fatality--but not Alzheimer’s, whose patient population has grown 60% since 2000, and is estimated to triple in the next 40 years. So more of us will either have Alzheimer’s, or will be caring for someone who has it.

It’s the 100th anniversary of the scientific study of Alzheimer’s disease. Our knowledge has grown quite a lot since that first case study.  But the two central, incontrovertible facts about Alzheimers are these.

It is still incurable.  

And the people who have it, are not cases--they are people. 

With a little music in their hands.

LOCAL RESOURCES:

Santa Monica Human Services Division

Senior Portal

WISE & Healthy Aging

Thank you to the Alzheimer’s Association for the above statistics. The Association fosters study and care of patients, and offers help for caregivers, including conferences with social workers. More info: www.alz.org. 

All photos are courtesy of Tamar Levine, from a series in progress, "Memories."