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.