"Please wear a tux," I said over the phone to Don, the classical violinist I was hiring to play a special concert for my 93-year-old beloved Ed in his room at the nursing home. As we were talking, I described Ed's state of dementia, adding that he had been a college professor of French who loved classical 'moo-sic.'
I was nervous about the whole plan, worrying that Ed might be in a bad mood and tell Don to leave. He still had an occasional temper outburst. After fretting about it, I'd decided to take the chance and go ahead with it. The concert would either bring Ed great joy or be a total disaster. That was just the way it was when you were dealing with a person with Alzheimer's.
When I arrived at Ed's room the day of the concert, I was relieved to see the aide had shaved him and dressed him nicely in a light blue shirt and his grey tweed sport coat, the one with leather patches on the elbows. Believe it or not, it was the same sport coat he was wearing the day I first met him way back in 1975.
While we waited for Don to arrive, I sat on the sofa with Ed. We talked about the conversation he'd had with his father the previous evening. Of course he hadn't had any such conversation, but at this stage of his illness, I'd always try to connect with him in whatever time period he seemed to live.
After a few minutes Don appeared in the doorway. His entrance startled Ed, who jerked to attention. I introduced Don and told Ed he was going to play a special violin concert for him.
"Oh! Superb! Wonderful! I'm honored!" Ed said as he shook Don's hand.
I had the feeling Ed was really impressed by the tux.
So Ed was honored and I was relieved. I set up my tripod. I planned to take many pictures, hoping to get at least a few good shots of what I hoped was going to be a special occasion. The longer Ed was at the nursing home, the more I felt photographs would be important to me later.
Don sat down on the tan metal folding chair I'd placed in front of Ed and began playing a Strauss waltz. The sounds were lively and luscious. I watched as his bow flew up and down, his fingers danced around, and his head snapped back on the high notes. Ed looked captivated. His eyes glued to Don, he had a rapt expression on his face and moved in time with the music.
"Bravo! Bravo!" he boomed in his bass voice while clapping at the end of the waltz. "That was the most beautiful 'moo-sic' I have heard ever in my entire, r-r-really long, and I emphasize r-r-really long life."
Don thanked him and began playing a Romanian piece, as I'd previously requested. Ed smiled broadly but I couldn't tell if he realized it was music from his Romanian homeland.
"Bravo! Bravo!" he called out again, clapping like before. "That was the most beautiful 'moo-sic' I've heard," he said. "Ever," he added. "I don't have words to say how happy I am that you are playing just for me."
"Thanks," Don said. "I'm glad you liked it."
Ed reached his hand toward Don and Don grasped and held it.
"What did you teach when you were a professor?" Don asked.
"I don't r-r-remember," Ed answered. Then he added, "Honestly, I'm not even sure I was a professor."
Tears came to my eyes.
Then since there were so many Gypsies in Romania and that was part of Ed's culture, I asked Don to play some Gypsy music. He played Bizet's Habañera from Carmen, and Ed sang along, jabbing his index finger in the air in time with the music.
"Tra la la-la, la la la la-la," he sang, a twinkle in his eyes.
"Bravo! Bravo!" he shouted at the end. "That was the most beautiful 'moo-sic' I have heard ever in my entire r-r-really long, and I emphasize r-r-really long life," he said for the third time. "You are the most talented 'moo-si-cian' ever, and I r-r-really mean it from my heart -- it's not just words from my lips."
Don played half an hour longer, the music interspersed with more hand holding and small talk. When the concert was finished, I asked Don to sit on the sofa beside Ed so I could take a picture of them. Ed put his hand on Don's arm and I snapped the photo.
Don left after many more good-byes, more excited compliments from Ed and thanks from me.
Some of the photographs were adorable. Ed looked as happy as I'd ever seen him. One of them shows him with both arms outstretched toward Don as he was playing. Another, taken when they were sitting on the sofa after the concert, shows Ed with his hand on Don's arm, looking as proud as if he were sitting next to the President or the Queen of England or something.
The pictures captured the happiness of a man who had lost so much, yet was still capable of intense joy. He was a man who wouldn't remember the concert two hours later, but he was captivated and delighted by every second of it as it happened. That's how joy is often experienced by people with Alzheimer's.
And over the years I, too, learned to rejoice at each of Ed's brief moments of great joy.
Marie Marley is the award-winning author of 'Come Back Early Today: A Memoir of Love, Alzheimer's and Joy', and co-author (with Daniel C. Potts, MD, FAAN) of 'Finding Joy in Alzheimer's: New Hope for Caregivers.' Her website, ComeBackEarlyToday.com, has a wealth of information for Alzheimer's caregivers.
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