I was emotionally devastated, as are all caregivers at one point or another. My biggest sorrow was that I couldn’t find ways to have meaningful interactions with him.
By Marie Marley
+Alzheimer's Reading Room
My beloved Romanian soul mate, Ed, had been a university professor of French and a classical music lover. He loved orchestral music, especially that of Bach, Handel, Mozart and Beethoven.
He hated all forms of vocal music, however, and was always telling me he couldn’t stand to see singers on stage “with the open mouth.” Whenever he said that he opened his mouth wide and grossly mimicked an opera star hitting a really high note. I could never figure out how he thought they were supposed to emit sound without “the open mouth.”
At any rate, he’d always enjoyed watching conductors on TV, especially the flamboyant ones. The wilder they were, the more he loved watching them.
Being a former performer who had spent years playing in orchestras, I had tried to convince him that the flashy ones didn't necessarily obtain any greater result from the players than the more sedate ones, but he never believed me.
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When Ed developed Alzheimer’s I was emotionally devastated, as are all caregivers at one point or another. My biggest sorrow was that I couldn’t find ways to have meaningful interactions with him.
Visits weren't very satisfying. Although he was capable of light verbal exchanges, he wasn’t able to engage in the lively conversations we’d always had. Mostly he would deliver his two long monologues at every visit. They never varied. It was as though this man living with Alzheimer’s had actually memorized them.
One long monologue was full of praise about how beautiful I was; the other was about how lucky he was that I was visiting him.
I should have been delighted by all the affection and praise in these two monologues, but unfortunately I wasn’t. At that point I wasn't able to accept his condition. I wanted to talk with him as we did before he developed Alzheimer’s - not be simply talked to by him. Not be presented with the same material he repeated verbatim at every single visit.
I wanted my old Ed back. I wanted back the great man I had loved for over thirty years. The one who had been my rock. The man who had always supported me emotionally. Who had always there for me. The man with whom I talked for hours and with whom I laughed heartily during many of our conversations.
I couldn't accept this new Ed with whom I had difficulty connecting, and who usually didn’t understand what I was telling him on the few occasions when I talked about what was going on in my life.
When I voiced my lament to my friends many of them suggested that I look at old photos with him, watch his favorite TV shows with him, or listen to music with him.
I had always assumed that listening to music with Ed would be boring for both of us, but one day I relented and decided to try it anyway since that particular day I couldn’t seem to reach him at all by any other means.
After trying to converse with him for a while and after listening to his two lovely but boring (to me) lengthy monologues, I put on a CD of Mozart’s Jupiter Symphony and started it at the last movement.
I was greatly surprised by his reaction. Almost immediately his eyes sparkled, his whole face beamed, he sat up straight, and moved in time with the music. It was a joy to see him come to life like that.
Then, for some reason I can’t explain, I began ‘conducting’ the music and I did it in the style of his previous favorite conductors. I conducted with both hands, arms flying around, sometimes in tandem, other times going in opposite directions. That made him really smile, which made me smile and encouraged me to keep going and become even showier.
I pretended I had a baton in my right hand, and cued each section of the orchestra when it was time for their entrances.
Ed continued smiling broadly and moving perfectly in time with the music, which really impressed me. Typically those days he couldn't do anything remotely near perfect.
I stretched out both arms and bounced up and down on the balls of my feet when the music was loud, then crouched down and conducted in a tiny circumscribed area using only my right hand when the music was soft.
When the music was the most pianissimo, I put my left index finger up to my lips in a “shh . . .” gesture while my right hand continued conducting in small circles. He laughed out loud at these motions which, again, inspired me to continue.
I constantly shifted my gaze to the section of the orchestra that was playing the most prominent role at a given moment.
After the final chord I made a gigantic melodramatic cut off movement, remained completely immobile for a few seconds, then bowed deeply – first to the right, then center, then left.
Ed, who had been sitting in the rocking chair during this entire theatrical production, looked positively radiant. After my final bow he looked at me and said in a soft and almost reverent tone of voice, “What you did was so beautiful.”
It brought tears to my eyes. How wrong I had been. Listening to music with Ed had been anything but boring. It had opened up a new way of relating that was satisfying to both of us. It had brought him great joy and consequently brought me joy as well.
After this improvised “concert” I resolved to stop being upset that my “old Ed” was gone forever. I became determined to relate to him on whatever level I could. I rejoiced in the knowledge that I could make him happy. I could make him smile and laugh – things he hadn’t done for months.
Seeing his joy became enough for me, and I decided to continue these performances he loved so much.
Marie Marley is the award-winning author of the uplifting book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy. Her website contains a wealth of information for Alzheimer’s caregivers.
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