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.

Hello Old Friend

Rome and New York share this in common: everyone wants to come for a visit. We have had a flurry of visitors from the United States these past few weeks. Some travelled alone and made good use of our guest room, while others were with family and just came by for lunch, a coffee, or met up with us in the city. My sister managed a 10-day visit before starting a new job, and we planned a beach getaway, but more on that in my next post. This time I want to write about one of my mother’s oldest and dearest friends from college.

My mother has often said that friendships formed in childhood and adolescence have a special kind of staying power, and her theory is that it is a time in life when intimate, secret thoughts are easily shared, and formative experiences together provide memories that last a lifetime. In the case of Irma, their experiences at Barnard College in New York City

Maureen and Irma
at a Barnard Reunion

went beyond their undergraduate education, because both continued to be very involved in the college and Irma’s career was in the administration. My mother’s older sister Helen was the Director of Admissions for most of her career, and so all three spent a great deal of time together on and off campus.

Irma played another important role in our family’s history. When my mother travelled to Europe for the first time in 1955 to assist a family with childcare

Maureen wore white gloves and a corsage in 1955

during their summer vacation, Irma provided her with family contacts in Rome, since she had a month to explore Italy on her own. Once she got to her pensione, she set out to find a place for a haircut. She wrote about this in her memoir, and even jotted “hair” in her travel diary which she still has.

The travel diary includes my father's name on June 9th

Irma’s aunt sent her son, Virgilio, to pick her up on his motorcycle and bring her over for dinner, and my mother described her time with Irma’s family in those early days as “the perfect beginning of a lifetime love of Italy.” After a few days visiting Naples, Capri, Amalfi and Sorrento, it was back to Rome.

This is how we often told the short story of how my mother met my father:

They met at the top of the Spanish Steps, in Piazza Trinita’ de’ Monti, and he invited her for dinner and then took her on his Lambretta to hear the crickets in a forest of pine trees. She was scared that she was in the middle of nowhere with a stranger but it all turned out okay.

That version persisted in family lore until after my father’s death, as my mother began working on a memoir, with original letters they had written to each other, and with letters she had written to her sister and mother. This rich archive had been unopened for decades. As we worked our way through our collective memory of important family history, I wrote a poem about their first meeting which said, in part:
    It starts out as a storybook romance.
    My parents,
    they met for the first time
    in the summer of 1955,
    at the top of the Spanish Steps in Rome.
    There's a little piazza up there, Trinita' dei Monti,
    that looks down on the tumbling expanse of travertine steps
    and ends in the Bernini marble boat of a fountain;
    her pensione was nearby, so the group gathered there
    before going off to dinner somewhere.
    And even though he never told me this,
    I know (somehow) he must have really been smitten
    (was it her short dark hair, or the way she slightly tilted her head 
    back when she laughed in the photograph I have of her from that           summer?)
    because he invited her for a ride on his Lambretta
    (she swung her feet to one side and held on to his waist)
    to go listen to the crickets in the pine woods on the outskirts of 
    the city.
    She always said she was terrified,
    but in the end that's just what they did.

It turns out that my father told our friend Gabriele the story, and he remembers clearly that he took her along the Appia Antica to the Tomb of Cecilia Metella. If you look up images of this place you will see the ruins of a large round tower surrounded by an expanse of green fields. In her memoir, she recalled my father explaining, once they stopped driving along the Appia Antica, that it was one of his favorite spots in Rome.

“I come her alone often because it is so quiet and you can clearly hear the crickets.”
Hear the crickets? I thought. I’m a goner. No identification, no money (both carefully locked in the safe at my pensione), no one who would miss me because no one in the world knew where I was.

“Crickets?” I asked in a small somewhat terrified whisper.

“Rome is famous for its crickets. Here, let’s walk farther from the road so we don’t hear the traffic noise.”

We walked 50 meters into the field, stood silently for a few minutes until Silvio finally said, “Isn’t that an amazing sound, right here in a Roman field just on the outskirts of a huge city? Just think how the ancients must have felt hearing this music.”

He turned to lead the way back to the road and I thought I must have been dreaming. I wasn’t raped, or savaged or abandoned. We’d just been listening to the crickets and we drove back into the city without a word. The next day I discovered that Silvio had left a picture book, “Visioni di Roma,” at the pensione for me. Inside was a short note explaining that in case my camera didn’t do justice to the city he wanted me to have happy memories of Rome. I thought it was a sweet gesture, tucked it away at the bottom of my suitcase and promptly forgot about it and about him. Who could have guessed that our lives would be forever entangled! 

On the next page, she recounts the version of the meeting that was sent in a letter to her sister Helen:

I met Sergio’s friend Sandro. He brought Silvio and two other couples and we all went out for a short while. Then Silvio took me to dinner and for a moonlight drive along the Via Appia Antica. It was most romantic with a full moon and the ruins. He is very sweet and even came by today and brought me a book.

Later in the memoir, after sharing an important letter from my father, my mother got to the heart of the matter:

Memory plays tricks. It is selective, personal and often untruthful. Now, sorting out my emotions so many years later is difficult and dangerous. But I do know that I read his words over and over, perhaps hundreds of times…I wondered how Silvio could know me so well.

People often write about Alzheimer’s as a disease that “steals memories” but I don't think that's an accurate characterization. What I am noticing is it is certainly not a linear process of remembering less and less. My friend Anne Basting started an organization, Time Slips, that helps communities of elders with dementia to develop their imagination through storytelling without pressure to recall details of personal memories. In my experience, our brains, regardless of disease, are constantly processing our past experiences, rearranging the sense we make of them, especially when something happens to trigger a response, like a familiar image, or a visit with a friend. So it was when Irma and my mother spent a day together, reading portions of her memoir aloud to each other, laughing, sharing stories and enjoying each other’s company as they had so often in the past. They even figured out that Irma’s cousin Virgilio was not responsible for the fateful encounter with Silvio, that Sandro was a friend of someone my mother knew who taught at Princeton, and had brought Silvio along because he spoke good English.

My mother’s professor at Teachers College, Larry Cremin, used to say that history is the imaginative reconstruction of the past. I know the story of how my parents met and fell in love is still evolving. Now that we live in Rome, we can (and will) drive out along the Appia Antica to the Tomb of Cecilia Metella, perhaps even on a moonlit night, to hear crickets.