PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Friday, December 16, 2011

In The Moment: A Story in Four Acts with A Prologue and an Epilogue


You had to be in the room to appreciate what happened. You had to BE either Gregory or Michael to REALLY appreciate what happened. I can speak about what I experienced but can only imagine what Gregory experienced. When asked, the best he was able to reply was, "It was all of it."


Aaron, our "guest" researcher working on his doctorate dealing with a study of caregiving partnerships, joined us for the evening not only for further observations for his dissertation but also to help make Christmas cookies and to join us for dinner. He brought a bottle of wine. Red, full bodied, delicious.

Gregory and I have come to look forward to Aaron's visits and find him good company on many levels. He is a affable person, intelligent, and actually wants to hear what we (I) have to say about living with Alzheimer's.

I qualify here that Alzheimer's is an easy to use general term. Putting one's medical finger on exactly what is going on with Gregory and labeling the type of dementia is not obvious. Perhaps Frontal Lobe Dementia is more fitting based on my observations and limited knowledge of dementias. But most people know Alzheimer's and using the "label" makes it easier to discuss as well as easier to get medical services and support.

On my part besides having an evening's company, considering Gregory's difficulty with language, I find myself more and more in need of intelligent conversation outside of our relationship. Aaron helps provide this. So we discuss not only Alzheimer's but also world politics, the weather, Gregory and my relationship, our history, or families, etc.


Gregory was quite animated as we talked about his family and his early years. At one point he excused himself and returned to show Aaron a photograph of his parents, Helen and Ed. Gregory took piano lessons, which while forced by his mother, he adored.  Helen was a concert harpist and music played an important role in the Maire Family. When he went to college he gave up piano, probably in reaction to his mother's musical attentions and also in a move towards youthful independence.

He kept in storage the piano that had been passed on to him by his mother, reclaimed it when he and I first knew each other, and then passed it on to his niece Renee when we purchased a magnificent new Grand Piano for our first home together. I remember him "auditioning" pianos at the piano store with Helen and Renee in attendance. One piano with a beautiful voice and the perfect action found its new owner. Gregory was dedicated to his piano, practiced, studied, and became close to a concert pianist himself.

One day he sight played one or two pages of Chopin's Ballade in G Minor, Op. 23. We both fell in love with it and at my encouragement he decided to "tackle" the piece and learn (memorize) it. He probably spent five years doing so. The ten minute piece is very difficult and complex and the kind of music that someone like Artur Rubinstein would play as an encore after a magnificent concert at Carnegie Hall.

Slowly but surely, Gregory perfected the piece. He would always joke that, "You must be tired  of listening to me "bang" through this." I always assured him that I thoroughly enjoyed listening to him practice and often would lay on the sofa and with my eyes closes, listen and drift. Finally, Gregory performed Ballad at a Musicale at friend's Chuck and John's home where, as was done in the Victorian Era, our "Gay Family" shared their performance talents for an evening's entertainment.

Since Gregory decided to sell his piano over five years ago now, being unable to play due to Alzherimer's, he has been content to listen to music on CDs. Only two or three times in the five years has he mentioned that he missed being able to play. We listen to music every evening during dinner, more often on the weekend. We have listened to our beloved Chopin Ballad in G Minor, Op. 23 many, many times. I find myself whistling it when we are in the car, Gregory joins in, and we laugh and wonder why it comes to mind at any particular moment.


Back to Aaron's visit. We chatted, had coffee and Christmas cookies which Gregory and I made a few days earlier. We laughed, we shared. We listened to Christmas music and made a batch of Vanilla and a batch of Chocolate Walnut Ball Cookies from my mother's recipe. Over a gross of cookies were made. We cleaned up and messed up again as I started dinner. Aaron, Gregory and I worked as a team throughout. I was chef, they were the sous chefs. It was fun and we worked together smoothly.

At dinner we talked of Gregory and my past, our present, a lot about Aaron's life, and about things worldly. We got back onto talking about Gregory's family and spent a lot of time talking about his childhood and his parents. When I say "we," you must understand that I mean "I." Now-a-days I am his words, I am his memories. But I know him so well after thirty five years that he might as well be the one talking. He nods with acknowledgement as I tell his story and does join in now and then with carefully thought out and carefully worked out additions.

Through the evening Gregory had shared some of his activities with Aaron; his paintings, a book he was reading, a jigsaw puzzle he is looking forward to working on after the holidays, a photograph or two. Mostly his sharing was by showing. With great difficulty she shared a memory or idea or two using words (with my help.)

After dinner, suddenly Gregory got all excited about something he wanted to share with Aaron. He couldn't organize his words so our "guessing game" began. Again, knowing Gregory as well as I do and based on the shape the evening had taken so far, I was able to figure out that he wanted me to play the Chopin Ballad that he had learned many years ago so Aaron could hear the magnificent piece.

As the music began, Gregory and Aaron were sitting on their stools by the kitchen island and I was sitting across from Gregory on a living room chair.


Chopin's Ballade in G Minor, Op. 23 starts out slowly and quietly and then builds and builds with amazing complexity and crescendo.  We all listened quietly and almost as soon as the music began, Gregory closed his eyes and began "remembering" the piece with his hands and body. Aaron observed, I watched. Gregory rocked with the music. His body reflected the peeks and valleys as well as the alternating calmness and intensity of the music. When the notes were high, he moved his hands treble-ward. When the notes were low, he moved his hands base-ward. When there was a trickle or wave of notes from one height to the next, Gregory's fingers would waggle in response. When there was a pause or breath, Gregory would pause or breath. When there was a strong point in the music, he would punctuate it with his finger or fist.

His eyes closed the entire time, although sometimes I could see the whites of his eyes as they fluttered, Gregory was no longer in the room with us. He was reliving the piece. He was sitting at his Grand Piano playing the piece. The look of concentration on his face, the look of joy, of bliss, of rapture told me that he was experiencing each note as he had spent so much time practicing and learning to play them.

I had to look away often because I was overwhelmed with emotion. I stifled sobs, I shed tears, I breathed deeply to avoid lamenting aloud and disturbing Gregory's reverie. Having regrouped myself, I would return to watching, with amazement, Gregory's performance. Then I would have to look away again, my eyes cold with evaporating tears, my body and lips quivering with the experience. Aaron sat quietly and watched ... and observed ... and took notes.

As I watched, I recalled the first time Gregory performed the piece, some fifteen or twenty years earlier at Chuck and John's Musicale, after having struggled and spent so much time learning it. I had to leave the room because I could not stand the suspense and perhaps terror of wondering if Gregory would be able to make it through the piece and not panic as he admittedly did sometimes in front of an audience.  The performance was a spectacular success, note perfect. I think it was really a high point in his life.

This time I knew I would not leave the room, not only with the suspense and perhaps terror of how Gregory's current "performance" would end, but with the suspense of how I would survive it. When the last note was hit, and its vibration had ended, in the silence Gregory opened his eyes and began sobbing. I gave in to my emotions and let the tears and sobbing out as I got up and went to him. We hugged each other, shaking and sobbing and me whispering, "That was wonderful. It's OK. That was wonderful. It's OK."


Aaron went and got a box of kleenex from the guest bathroom and all three of us dried our eyes. Gregory and I had gone through an amazing experience. Aaron had not lived it as we had, but none-the-less was moved to tears. Later he asked, as the researcher in him dictated, if we could explain what happened. I was still so emotionally charged that I told him I didn't want to talk about it right then but certainly would be writing about it and would share that with him. Gregory's response was, ""It was ... (searching) ... all ... (searching) ... of it."

For me describing the experience is pretty clear. I felt that I was watching from the outside, something very precious and sacred going on in Gregory. I was feeling great joy and love watching him relive his moment of glory. I was amazed that he could remember each note, each bar, each section of the piece. It felt like the "old Gregory" was back with me and back for himself, for that brief ten minutes.

As well, I was grieving all that has been lost in these eight or so insidious, confusing, frustrating years of Alzheimer's. I was celebrating all that is still with us even through these trials. I was filled with sorrow as strong as my joy. I was able to acknowledge for myself that I have been able to help him to feel happy, content, purposeful, and safe through his losses. I was feeling guilty and renewing my resolve not to be impatient, frustrated, and at times mean and disrespectful. Most of all, there was something so magical, and strong, and spiritual about sharing this experience with this man whom I love more than life.

As far as what Gregory was experiencing, I can only surmise. He certainly was in the moment. Alzheimer's did not exist. He was in and of his music. He rode each note as Chopin has written them and as he had practiced them so long ago. He definitely was no longer in the room with us, he was in the music.

Reflecting how Gregory has been dealing with his cognitive losses, I believe that his tears after his "performance" most likely showed how joyful he was to once have been able to play his beloved piano, not grief of having lost the ability. I believe that for at least ten minutes, his entire life - childhood to manhood - became one unified joyful, celebrated memory without any of the frustrations of Alzheimer's and ... he cried with that joy.


  1. Absolutely, staggeringly beautiful.

  2. Dear Anonymous,
    If you wish to remain anonymous that is fine with me. However, would love to know who you are. If you are comfortable doing so, just leave your initials in the comment box.

  3. I read this before I went to bed last night and cried for a half hour. I couldn't even bring myself to respond until today. I'm happy you all had this experience. I also think this is the best piece you have ever written.


  4. Thanks, Michael, for this beautifully written piece. It reminds me of all that I treasure in Greg and you, past and present. Like the Chopin Ballade, it expresses torrents of complicated emotion and intellect, but also the clearest, simplest song. Much love to both of you....

    John Hn.

  5. Michael, that was such a beautiful and heartwarming blog. I know you were so proud of Greg.

  6. My dearest proud of how u have such a talent to write. This piece could b printed or I should say should b printed for the public to enjoy. I cannot think of enough adjectives to describe what I felt as I read your blog. My eyes were wet with tears, my chest was tight with emotions...but I enjoyed reading and just felt such pride for u. I love u both so much.

    seester :)

  7. Hey Michael,

    I did read it, read it with tears streaming down my face but just before I was running out the door to Lily's performance of The Nutcracker Suite and didn't have a chance to leave a message or comment. Anyway, your description of what happened was phenomenal. I was with you in the moment, could completely envision the experience, could hear the music, remember how he would sway while playing it...beautiful! Thank you so much for sharing. This one will be saved in the archives...

    Love you so much! Merry Christmas and Happy Hanukkah!!


  8. Wow! I just used my sleeve, no time to get kleenex. How many miracles happen in our lives...I guess we just have to be present for them. Oh and lots and lots of love help us to see and feel them. Thank you for sharing a real miracle for me at this time of miracles.
    I love you guys so much.

  9. Dear Michael,

    I come to you via Jan and via the simple marble track gravity pull of being drawn to others processing living with people with memory loss.
    My Mom died last October having lived a long vital life until her own version of AD. While the struggle was laced with her own aging and attitudes about what was obviously the 'end' of her life- or certainly, her life as she knew it, there were moments of absolute beauty- catalyzingly clear because of the cost- the exchange that you so beautifully capture here.
    Thank you for writing this gorgeous story. I look forward to reading more of you.
    Please hug Gregory for me, so you will receive the hug I'd like to give you now. May your holidays be filled with soft light and lovely melodies.
    Sincerely, Suzi Banks Baum






  11. breathtaking Dec. 16 entry, “In the Moment,” the (justifiably) long and complicated Chopin story. Well-told, moving, and as I have said before, wonderfully generous of you to share it.



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