The unexpected setback

Caretakers of people diagnosed with Alzheimer’s or other forms of dementia know that even the most fluid and comfortable daily routine can be interrupted by the slightest thing: a stuffy nose can be cause for alarm, a clumsy stumble into a chair causing a bruise, water going down the wrong way and causing a coughing fit. Most of what one reads about this disease creates a picture of slow, steady decline, but in my experience the reality is more like a boat on the sea. It can be calm and beautiful, peaceful and serene for a bit, and then the wind picks up and there’s a gentle bobbing up and down that eventually feels manageable. But if bigger waves arrive, you cling to the side of the boat, fighting nausea, and wanting the motion to please, please just stop.

Nerves and neck bones don't
always get along

So it has been for us the past week. First, there was a return of neck pain due to cervical radiculopathy, a pinched nerve that can cause tear-inducing pain through the neck, shoulder, and arm. In desperation, because it was a weekend, I gave my mother the medicine she had previously taken about a year ago, Gabapentin, which is effective but we were glad to get her off it. Although it worked to help the pain subside, it caused great drowsiness. I tried my best to help my mother do the regular exercises that I learned from her physical therapy back in New York, but she was increasingly stiff and unable to turn and tilt her neck. Still, she managed a dental visit to have a permanent

Our traditional Thanksgiving plate

crown fitted, and a Thanksgiving weekend visit with our friends from Reggio Emilia complete with a big roast turkey lunch, and even dinner out the night before. Sunday we went to see our friend perform in a comedic play, and the week that followed was pretty normal, with a social invitation for tea with our neighbors Sunday afternoon.

The following Monday we celebrated because I passed my driving road test, the final hurdle to obtaining an Italian driver’s license. This had been weighing on me since the summer, and it had taken two tries to pass the true-false theory exam as you can only get 4 questions wrong out of 40, and about 10 are really tricky even if you study as if you have to pass a bar exam. But my mother was

Mimi knows when my mother needs her

weaker and started using her cane again, and by Thursday I had rented a walker. Friday was spent mostly asleep in bed, but I managed to get her to the doctor’s office for a 7pm appointment. Her regular doctor was away, and had reassured me on the phone that her colleague would handle whatever was causing the decline (and that might simply be a curable infection). Doctor Bacci was so charming, and having spent a few years in Cleveland and Brooklyn, spoke perfect English. He listened carefully to her lungs and heart, and prescribed a course of antibiotics, switching her from Gabapentin to Tylenol with codeine at half a dose, and ordered some blood work.

By Sunday she could no longer walk or even stand for more than a few moments. The blood work revealed anemia, so we began treating her with iron and vitamin B12 shots. The company that handles her lab work, Bios, also provides at-home nursing care, so I got badly needed help in bathing her in bed and getting other tests done. She continued to eat and drink, although this was all more difficult, but we figured out what worked best (thank goodness for children’s sippy cups). I bought a bedside commode so she could be spared the indignity of giant adult diapers, which she kept trying to rip off at night. As usual, patience and humor paid off and now she seems to have turned the corner back to healing and health and I am finally breathing sighs of relief.

What I have learned is that the unexpected setback, even the most difficult one, is a kind of test to see how to manage stormy seas. Like other challenges in life, it can be viewed as a learning opportunity and provide a window into how to better manage the next curve ball life throws at you. Watching the nurses, I learned a few tricks about moving my mother’s body without hurting her, and found the strength needed to get through nights of sleeping and waking not unlike what new parents go through as their babies try to adjust to life outside the womb. I thought about the young people from my driving school who also passed the road test and now were going to have to cope with the wild west traffic of Rome (although having lived here they are probably more used to it than I am). It takes a close call, or even a fender bender to appreciate the importance of being extra cautious when driving in city traffic.

I know it seems strange, but I feel more ready to accept the end of life when it is coming. My gratitude for the help in seeing my mother through the unexpected setback gives me renewed joy in every precious moment we get to share, no matter how hard.

All About Chiara (an artist we love who just had her first solo exhibition!)

Normally there is virtually nothing that can entice my mother to go out of our apartment after dark. She happily settles in to a routine of PBS Newshour and snacks, dinner, some entertaining TV, and an early bedtime. Usually, I am happy to provide all that, and even put a little extra effort into dinner, but recently I persuaded her to come with me to see our friend Chiara’s opening of her first solo show of paintings at Link University here in Rome. As first solo shows go, it was a pretty big deal, and a featured part of Rome Art Week.

Chiara Pasqualotto has been my friend for many years and we met in the U.S. through a connection at the University of

Michigan. As someone with a background in art history, who worked in contemporary art galleries and in public art, I pride 

myself on having a good eye, and recognizing talent. Chiara has had it since I first met her, when she was just beginning her journey as an artist. Here is the first work of art I owned by her, a gift, and a portrait of my cat Cocco, staring out the window of my Manhattan apartment. Later, Chiara and I collaborated on a children’s book idea entitled

Al and Ralph dine at the Raccoon Lodge      

Alfonso’s Arrest, about an alligator who gets lost in New York and ends up getting unjustly arrested. His best friend Ralph, a raccoon who lives in Central Park’s Belvedere Castle, rescues him and they celebrate over dinner. We have tried to get this idea to a publisher with no luck so far, but here is one of Chiara’s exceptional illustrations for this story.

When Chiara first told me about her abstract paintings I was startled by the total departure from her figurative work in drawing and illustration. But the more I looked, the more I understood that this was a natural evolution for her as an artist. Her landscapes were increasingly dreamlike, and I saw the paintings as a freeing kind of color exploration that enabled Chiara to play with organic shapes in movement, overlapping tones and hues that created a harmonious feeling of joy on the canvas. I fell in love with her paintings!

Last December, I decided with my mother that we should buy one as a Christmas present to ourselves. It hangs in our living room where we look at it constantly and never tire of it.

Since Chiara has begun doing work in printmaking, we also own two of her recent etchings, one of an owl, and one of a sycamore seed. The sycamore trees line the Tiber, and I feel her tiny pod is a little love letter to Rome. I have always been fond of owls (and dissecting their pellets with elementary kids). Chiara’s owl is so soulful and bursting with personality that for me, only

Raphael in the Vatican

Raphael comes close to her perfection.

We arrived at the opening when only a few people were there, which enabled us to have a very nice time alone with Chiara admiring all the paintings lining the hallways by the university’s café space, especially one that she said was the “brother” of our painting. Soon the curator and other admirers had arrived, and my mother was ready to head home, so we slowly made our way back to the car, talking about how glad we were that we came, and saw Chiara’s beautiful work in such a perfect setting.

Maureen ponders one of Chiara's paintings

I know that these experiences with art and beauty, like the transcendent concerts we have attended in Rome, are deeply meaningful for my mother and for me. She easily forgets what happened in the news the day before, but she never forgets Chiara. We get to admire her artwork all over our apartment, and her painting is a vibrant pulsation of color and organic forms that feels constantly in motion, just like life.

Chiara gets around Rome on her bike

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.