The view from the terrace

Somehow every time I stumble on a journalistic essay on dementia or Alzheimer’s and eldercare, I hit the full spectrum of negative emotions like a head-on collision: despair, outrage, depression, anxiety, dread. One would think that being glued to the news of hurricane devastation in the southeast and the Senate Judiciary Committee’s confirmation hearings for Brett Kavanaugh would be enough emotional punishment this month, but I had to read Larissa MacFarquhar’s New Yorker article just days after his confirmation to the Supreme Court. Each day over breakfast my mother wanted to review the previous day, so just like Bill Murray in Groundhog Day, I’d start again with how the news had been unfolding, because she was already forgetting who was who, and what they wanted, and what it all meant.

After the hurricanes both real and metaphorical, she returns to her sunny spot on the kitchen terrace. For the past two days, she has been carefully watching the workers who have returned to a nearby terrace to complete the restoration that has been ongoing for almost a year. “You’re doing that painting so carefully!” she remarks across the driveway separating our building from the adjacent one, and I gently remind her from inside the kitchen to speak in Italian. It is not unusual for us to chat from the terraces with our neighbors,

Maureen watches from the terrace 

and since the workers must have seen her watching them I suppose they did not find it odd that she called to them. It is true that some people with dementia lose their inhibitions, and may talk to strangers more readily than was the case prior to their diagnosis. My mother has always had the gift of engaging others in conversation; perhaps it’s in her Irish blood, or is a benefit of a lifetime career in teaching.

The New Yorker article describes a trend in nursing homes to create stage-like settings that simulate a small town, with faux storefronts and fake facades of clapboard houses. At the heart of her reporting is a dilemma she describes in the video “backstory” available in the online version, namely if a woman’s husband died a decade ago but she doesn’t remember, does one tell her again and again, only to have her bereave his loss each day? Or does one simply say oh he’s not here, he’s at the office, ostensibly to comfort her? Apparently the consensus and practice in most places dealing with such patients is that lying is easier, the kinder thing to do, but MacFarquhar says, “I just think there’s a price to be paid for lying all the time.” The people doing the care are changed by the lying, she writes. It wears them down.

I visited an upscale, newly renovated nursing home with two floors dedicated to memory care back in New York, and am still haunted by the experience. I felt as though I were visiting the set of a science fiction horror movie. Details of the “tour” are etched in my memory, like the person at a slightly out of tune upright piano in the common living area playing a Yiddish folk tune while residents sat silently, heads drooping, and an aide remarked on how the music made some of them feel sad. Perhaps to balance my permanent feelings about the existence of such places (and probably much worse than what I witnessed) I sometimes joke with my mother about the “chicken and broccoli place” where the daily menu rarely strays from the elder-friendly combo. It seems to me that the protocols of care in many of these places entail not only the prevalent it’s-kinder-to-lie belief, the medicate-don’t-agitate rule of thumb, but also the assumption that someone experiencing the effects of dementia is less aware, less capable of thought and emotion than the rest of us. I’m sure there are some exceptions to my characterization, as in this heartbreaking piece about a man with early-onset Alzheimer’s who finds a program for two days a week where “the walls are covered in exquisite artwork created by clients, there are real bowling shirts for the raucous Xbox live bowling league” for example.

But we need far more radical departures, deep cultural shifts. “Many of the residents were quite restless, and there was nowhere else to go,” writes MacFarquhar of the fake town with fake grass, fake lighting. Is it any wonder that patients in nursing homes beg to go home? How can we condemn them to a drug-induced solitary confinement, boxed in by walkers and wheelchairs, code-protected elevators and doors, and pretend that perpetual lying is an act of kindness?

In Anne Basting’s work with Time Slips, you can see the power of a simple idea. Instead of a focus on memory, she advocates engaging the imagination. In this clip showing her use the approach with a couple, the man shares that his favorite expression is, “If you’re honest you don’t have to have a good memory…you tell the truth.” Using a photograph, they create a story. It’s not a masterpiece, but it has charm and humor and more importantly, it engages the participants in an exchange of lively ideas and laughter. The result is something that is better than any of the individuals could have created alone, and not just because of what ends up written down on the paper. It’s the shared experience of creating it that matters most.

Towards the end of her article, MacFarquhar shares a quote from the late psychologist Tom Kitwood of the Bradford Dementia Group. “People who have dementia, for whom the life of the emotions is often intense, and without the ordinary forms of inhibition, are inviting us to return to aspects of our being that are much older in evolutionary terms: more in tune with the body and its functions, closer to the life of instinct.” Living in such intimate and close proximity to my mother, day in and day out, has provided many illuminating lessons, moments of grace; it requires of us patience and understanding, being present in the moment and with each other.

Still, I wasn’t expecting any exciting developments on her terrace observations when I returned from my exercise class. She shared that the workers' boss had come to check on the terrace restoration work, and from her observation spot she had gotten his attention and used some Italian and hand gestures to convey her informed opinion that the men had done exceptionally good work. The faces of the workers, she said, showed joy and pride, and a good deal of surprise too.

How We Play

In our family, we have always valued the arts. I grew up dancing, acting, singing, playing music on both piano and flute, going to live concerts and performances, and visiting museums. During her studies at Teachers College, my mother took courses with the renowned educational philosopher

Maureen, me, and Maxine

Maxine Greene, and they became lifelong friends. It seems appropriate to quote Maxine who repeatedly reminds us in her work that “we do not engage with artworks to find copies of an objectively existent world but to experience the artworks’ capacity to enable us to see more, to discover nuances and shapes and sounds inaccessible without them.” (p. 102 in Releasing the Imagination, 1995).

New York is a unique hub of creativity, and when I think about the privileges I have enjoyed, the concerts, shows, exhibitions, performances of all kinds that I have seen, it seems I have had more than enough riches for one lifetime.  I resolved years ago that I would never turn down an offer to attend a concert, or go on a creatively-minded outing because these experiences continue to enrich  and surprise me with their gifts. Here in Rome the first performance we attended was at the Teatro Olimpico, next door to where we first stayed when we arrived and hadn’t yet moved into our apartment. The Orchestra di Piazza Vittorio was performing their version of Mozart’s Don Giovanni, with a woman in the lead role. I first learned of the Orchestra when they formed in 2002 and a documentary about them was shown at the Tribeca Film Festival. They sought to create a musical group from residents of Rome’s Esquilino neighborhood with its rich ethnic mix, to bring those multinational musicians and their talents out of sociocultural marginalized contexts, and create something exuberant and new. In 2007, they began work on Mozart’s Magic Flute, through 2009, and more recently, in 2014, performed their interpretation of Bizet’s Carmen. Under the leadership of founders Mario Tronco and Agostino Ferrente, they have toured the world giving more than 800 performances to enthusiastic fans. (You can get a quick sense of the opening number from the video linked here). 

I got tickets for center orchestra seats for a 6pm show on Sunday, November 12^th, when my sister was going to be visiting us. The stage used minimal sets as musicians occupied a group of scaffolded platforms, and one side of the stage was taken up by a large screen with video projections. Cuban trumpet player Omar Lopez Valle was sick, and his understudy was announced from the stage before the show began. The androgynous Don Giovanni, expertly played by opera singer Petra Magoni, swaggered in and out of a white leather Chesterfield armchair that evoked both the past and contemporary times. The trio of other female performers, Simona Boo, Hersi Matmuja, and Mama Marjas used similar dresses and mic stands to great effect when singing back-up style circa 1970s, but they also sparkled in duets and solos that highlighted their musical ranges. Zerlina and Masetto’s

Mama Marjas as Zerlina and Houcine Ataa as Masetto
(photo courtesy Mama Marjas' Facebook site)

wedding scene had a pumped up party vibe, singing “dai balliamo e cantiamo e godiamo” until Don Giovanni intervenes with the famous “la ci darem la mano” and off she goes, unable to resist. The dramatic and dark tensions in Mozart’s opera were given less prominence than moments of tenderness and regret, but the light comedic touches were irresistible, especially the full company, minus Don Giovanni, singing “tutto, tutto, gia' si sa” at the end of the first act. A finale following Don Giovanni’s descent into hell gave us a pumping 1977 Donna Summer anthem I Feel Love, giving new meaning to the lyrics “fallin’ free.” I so loved this production, I bought more tickets for the last performance and went with two friends, so that I could see Omar Lopez Valle as Leporello. It is a testament to the enduring art form of opera that such a wacky and wild production could be so entertaining and musically satisfying, while straying a good deal from the original material.

Opportunities for engaging with music are particularly important for those suffering from Alzheimer’s and other forms of dementia. One need only think of stories from Oliver Sacks' Musicophilia, or the riveting 2014 documentary hit at Sundance, Alive Inside. The groundbreaking work of my friend Anne Basting of the University of Wisconsin-Milwaukee in her organization Time Slips suggests that creativity and imagination provide ways to meaningfully connect with a loved one suffering from memory loss. She has developed a program to engage communities in storytelling as theater, shifting the focus from one of loss to one of creative engagement. A 2016 MacArthur Fellow Anne has recently critiqued the Alzheimer’s Association for a depressing advertising campaign that she argues is “stealing hope” with a slogan that suggests Alzheimer’s steals one's imagination.

It doesn’t have to be that way. We intentionally play to engage our imagination. We went to see a Picasso exhibit that included video of theater sets and costumes he designed that are playful. We went to a concert of the King’s Singers at Rome’s Auditorium, and appreciated the exquisite musicality of six men singing in elaborate harmonies, taking us through centuries of a cappella music. (You can catch them on this Gold World Tour around the world). Their mission to “spread the joy of ensemble singing” is hard to resist as they take you on a musical journey that manages to be both sacred and playful, catching you in a wave of musical pleasure.

So, go play.