Eternal Music

In my age old book of childhood truths, angels were typically those “good doers” who would fly around and hang out somewhere in heaven. They were these elusive, not entirely human creatures, and yet, in their own way, you could count on them to do their divine job.

In the world of care giving for family members with a terminal illness like Alzheimer’s, the concept of angels was not entirely clear. As a daughter who had past the forty mark, it is hard to witness another “stranger” take over the care of my mother even though that caregiver has the best interests at heart. Although my Mom was a world famous concert pianist and suffered from early onset of Alzheimer’s disease, I knew intuitively how difficult it would be to connect to her because she saw the world through classical music eyes.

At the beginning of the disease, mom would use her fingers to play “piano” on her bed. I would tell these other caregivers with excitement how my mom used to be a classical musical ambassador and a world acclaimed pianist. I even went as far as trusting them with my own rendition of how she would accompany me back in the days when I auditioned for the famous Music and Art High School in Harlem and I would laugh at our mother-daughter shenanigans. They would say, “Oh. Wow!” but with reserve. They would try to make attempts to communicate with her as I watched like a hawk just to be able to “catch” any authentic moment that may help me reroute to my mom. During those times, Mom was acutely alert of the presence of these “strangers” and she would look at me and say, “Dorit, what are these people doing in my house? I don’t need anybody here taking care of me!”

“I know, I know, Mom. They’re only here for a short while,” I had said. But I really didn’t know what to say.

These caregivers, in their own way, opened the door to miracles coming into my own life like gifts waiting to be opened. However, I was waiting for the right caregiver to step in and act as that bridge between my mom and myself.

 

One day, in 2000, after a slew of different caregivers, the agency sent us Yvette Mascary, a first generation American from a town near Haiti. From the first day, she looked at me straight in the eye and said, “Your Mom understands everything. You just need to talk to her.”

Talk to her? I thought. I already know what she’s thinking! She doesn’t want anybody caring for her – that’s for sure.

Before my mom fully lost her ability read, write, speak and walk, they would go on long walks alongside the Hudson River. Yvette would take Mom to get a haircut and they would go shopping to buy fresh fruits and vegetables that would find their way into Yvette’s spicy and zesty home cooked dishes.

It was hard to not fall in love with this woman who had a robust laugh, enjoyed preparing foods and kept an engaging conversation going.

One day, Yvette fished through an old shoebox of Mom’s recital and concert tapes back in the days when Mom was in her prime piano playing years. In that shoebox was a tape when Mom played Argentinian tangoes at Carnegie Hall in New York City back in 1960’s. I had never heard that tape before.

She popped one of them into the cassette player.

As I suspected, she sat in her hospital bed and looked at the ceiling, but I could see her eyes moving.

“She knows what’s going on,” Yvette had said. “She understands everything. You just got to talk to her! You just have to play these tapes for her!” She held up the shoebox.

I got up and approached the bed. Mom turned her head and tried to open her mouth as if to say something. Eventually, her eyes found their way to mine. At that point, she could barely speak except to say an emphatic, “yes!” Our second long gazes were enough confirmation I needed to know I still had my mom.

One day, I tried to get her to talk. I was desperate to feel and know in my heart, she was still my mom.

I made my way over the bedrails and tried to get comfortable in her twin bed just like the good old days when she would climb into my loft bed, sleep alongside me and hold my hand telling me that everything would be alright.

“Momma?” I asked.

“Momma, can you hear me? Hey, Momma, what do you think of the city – New York City? Are the cops coming?” (This began as our small joke we started back in the early stages of her Alzheimer’s.)

She made a very slight head turn indicating she understood. I felt reassured knowing I had reconnected with my mom.

 

“You see?” Yvette cried out emphatically. “She understands everything!”

By and by, Yvette taught the weekend caregivers ways to work with the disease. When my Mom’s physical needs became progressively more acute, Yvette became even more resilient finding ways to support my mom by strapping her in a harness and started lifting her from the bed to the wheelchair.

The summer before Mom passed, I asked my seven year old son to play a piece on the clunky old upright piano which replaced her 1932 grand Steinway. The notes startled her. She grunted and groaned and squirmed in her elevated bed.

As soon as my son stopped playing, I shouted, “Continue! She needs to hear the music!” I even startled myself.

“Okay, okay mom. Relax,” he said.

After a few more measures, he stopped, looked at me and said, “But Grandma Carmen can’t talk,” my son said. “She can’t do anything!”

“That’s alright,” I slowly heard myself saying. “It’s the music she need to hear right now. That’s what keeps her brain alive.”

The notes he played during his practice run were sometimes wrong and the piano was so badly out of tune, but it didn’t matter. 

Mom squirmed a bit more, but it seemed she was listening. She gently moved her thumbs. In the darkness of my room one night, far far away from Mom, I sobbed uncontrollably. I wanted mom back. I wanted to twirl in front of the mirror and tell Mom, “Play Chopin! Mazurkas #45!”

There was absolutely nothing I could do to get my mom back. All I could do was play her music on those intermittent visits and trust in the fact that she received a high level of phenomenal care, more than she would ever receive at a nursing home. I deeply tried hard to believe that it was the music we had played for her all those years that kept her brain alive.

It is because of Angel Yvette, our Mom was able to live a few good years more. And I know she will be employed by another family who will love her just as much as my brother and I did.