In Memoriam Maureen McCann Miletta

August 30, 1928 -- June 12, 2022

Maureen has had an extraordinary life. She touched countless lives with her loving energy that made you believe you could actually change the world for the better with your smarts, your talents, your voice. Her praise was like a balm for the soul. You are beautiful, you are talented, you are a writer, you are an artist. Words that carried young people onto their destinations with confidence and a smile. 

These last five years of her life have felt like an extended dream vacation. Visits from friends and family, former students, meals, parties and trips to Tuscany with our Roman friends, and even the awful days of the COVID pandemic and Maureen's slow steady climb back to health, have been filled with her lessons of love and laughter no matter what comes her way. She even conquered that dreaded disease afflicting her brain, Alzheimer's, with her ability to constantly adapt, experiment, shift focus onto what really matters, and she clung to the words she most needed: lovely, nice, thank you, I love you, beautiful. Even buon giorno. Ciao.

Maureen in November of 2021

 All this was made possible in great part by the team of people supporting us, most especially Irene and Sheeba, and her physical therapist Gloria. In one memorable session, when Maureen was resisting what Gloria was asking her to do, she declared, "You're fired!" But Gloria was forgiven by the end of the session and it became a running joke. Maureen instead would say, "OK, Goodbye." Still she persisted in pushing herself, with her motto of "I'll try." Then the amazing doctors and nurses who came into our home and helped her to heal, to stabilize, to gain mobility and strength. These were unlike any interactions I have ever seen in a medical setting. Memorably, Dr. Libo, who got her back from the brink right before that awful February in 2020, who declared with a lively hand gesture of strength, "C'e vita ancora in questa donna!" More recently she has had Dr. Enzo by her side, and she emerged with smiles from her drowsy state the minute she heard his voice saying, "Buon giorno! Come va?" Our delightful friend and nurse Felix (a woman, unlike Maureen's grandson) who was on hand by some sort of magical synchronicity with Maureen's first nurse from 2020, Julie, when Maureen suffered her stroke and starting having seizures this November. The team of nurses and Dr. Simona Scicchitano from Antea have been giving her loving care at home since then.

Maureen leaves an incredible legacy with her two beloved grandchildren, Felix and Annabelle, who undoubtedly benefited from her praise and encouragement all their lives and are now flourishing young adults studying material science and music among other things. She is also survived by her niece Kathleen and nephew Peter, and her daughters Alexandra and Jennifer. She lived to enjoy her 93rd birthday.

Feel free to post a comment below, or, if you prefer or have difficulty doing so, you can send an email to amiletta@gmail.com and it can be posted if you wish.

Maureen ha avuto una vita straordinaria. Ha toccato innumerevoli vite con la sua energia amorevole che ti ha fatto credere che potresti davvero cambiare il mondo in meglio con la tua intelligenza, i tuoi talenti, la tua voce. La sua lode era come un balsamo per l'anima. Sei bellissima, hai talento, sei una scrittrice, sei un artista. Parole che hanno portato i giovani alle loro destinazioni con fiducia e un sorriso.
Questi ultimi quattro anni della sua vita sono sembrati una lunga vacanza da sogno. Le visite di amici e familiari, ex studenti, pasti, feste e viaggi in Toscana con i nostri amici romani, e persino i terribili giorni della pandemia di COVID e la lenta e costante ascesa di Maureen verso la salute, sono stati riempiti con le sue lezioni di amore e risate nonostante le cose che le capitano. Ha anche vinto quella temuta malattia che affligge il suo cervello, l'Alzheimer, con la sua capacità di adattarsi costantemente, sperimentare, spostare l'attenzione su ciò che conta davvero, e si è aggrappata alle parole di cui aveva più bisogno: adorabile, gentile, grazie, ti amo, bellissima. Anche in italiano: Buon giorno. Ciao.
 
Tutto questo è stato reso possibile in gran parte dal team di persone che ci supportano, in particolare Irene e Sheeba, e la sua fisioterapista Gloria. In una sessione memorabile, quando Maureen stava resistendo a ciò che Gloria le stava chiedendo di fare, ha dichiarato: "Sei licenziata!" Ma Gloria è stata perdonata alla fine della sessione ed è diventata una barzelletta fra noi. Maureen invece direbbe: "OK, arrivederci". Eppure insisteva nello spingere se stessa, con il suo motto "Ci proverò". Poi i fantastici medici e infermieri che sono venuti a casa nostra e l'hanno aiutata a guarire, a stabilizzarsi, a guadagnare mobilità e forza. Queste erano diverse da qualsiasi interazione che avessi mai visto in un ambiente medico. Memorabile il dottor Libo, che l'ha ripresa dall'orlo poco prima di quel terribile febbraio del 2020, che ha dichiarato con un vivace gesto di forza della mano: "C'e' vita ancora in questa donna!" Più' recentemente ha avuto il dottor Enzo al suo fianco, ed è uscita sorridente dal suo stato di sonnolenza nell'istante in cui ha sentito la sua voce che diceva: "Buon giorno! Come va?" La nostra deliziosa amica e infermiera Felix (una donna, a differenza del nipote di Maureen) che era a portata di mano per una sorta di sincronicità magica con la prima infermiera di Maureen del 2020, Julie, quando Maureen ha avuto un ictus e ha iniziato ad avere convulsioni a novembre. L'equipe di infermieri e Dott.ssa Simona Scicchitano di Antea le hanno curato con amore a casa da dicembre.
Maureen lascia un'eredità incredibile con i suoi due amati nipoti, Felix e Annabelle, che senza dubbio hanno beneficiato dei suoi elogi e incoraggiamenti per tutta la vita e ora sono giovani adulti che studiano tra le altre cose la scienza dei materiali e la musica. Lascia anche sua nipote Kathleen e il nipote Peter, e le sue figlie Alexandra e Jennifer. Ha vissuto per godersi il suo 93esimo compleanno.
Sentiti libero di pubblicare un commento qui sotto o, se preferisci o hai difficoltà a farlo, puoi inviare un'e-mail a amiletta@gmail.com e può essere pubblicata se lo desideri.

 

In Home Hospice Care

Spring is here, and Maureen continues to be remarkably stable after her hospitalization in November last year. Although she can no longer walk, she tolerates the recliner or her wheelchair for hours at a time, and still gets physical therapy regularly, and continues to surprise us with her strength, humor, tenderness, and expressiveness.

We just learned of the passing of our dear friend Hilda Steckel, who got pneumonia late in March, and as she worsened expressed her wish for palliative care only. She passed peacefully, having family all around (and grandchildren on video calls) on her terms. So despite our sadness, it is always a relief mixed with joy when a life well lived can end as the person desires.
 
Too often barriers to access of high quality palliative and hospice care remain, despite the exponential growth of hospitals with palliative care teams over the last two decades. What’s worse is that healthcare costs for dementia patients are substantially higher than for those with other serious diseases and illness, and place a large financial burden on families. The Center to Advance Palliative Care based at Mount Sinai in New York City argues that to meet the growing demand, newer models of community care in nursing homes, patients’ homes, and hospice facilities are needed.
 
Here in Rome we are remarkably blessed to be partnering with the non-profit foundation Antea, through the free Italian healthcare system, which provides us with in-home hospice care for Maureen. Right now we are having daily nurse visits, weekly doctor check-ups, and a 24-7 help line to call when needed. Antea also provided us with a hospital bed and medical and medicine supplies, which has greatly reduced the number of times I have to run to the pharmacy. Much more importantly, they are teams of experienced professionals, and treat me and my helpers as partners in Maureen’s care. It has made a world of difference to have this support.
 

Antea's facility in Rome

Antea’s story began in 1987 under leadership of an oncologist, now President Giuseppe Casale, and became a non-profit foundation two years ago. It is part of a national network for palliative care, guaranteed as a right by the 2010 law 38, and written with the assistance of Antea personnel. They describe their story as beginning with a decision to take on a responsibility “to give all our time to those who have little time left, to do our best to offer quality to those who feel abandoned. We chose to do so smiling because if palliative care is interpreted as a holistic approach and not just a simple pharmaceutical therapy, this is an extra something that Antea decided to provide.” Antea serves 150 families in total, with 25 patients in a hospice facility in the Park of Santa Maria della Pieta’ in the Monte Mario area of the city. Teams of doctors and nurses, and as needed, psychologists, physical and occupational therapists, social workers, nurse assistants, spiritual guides, volunteers, and office workers all participate in this amazing mission. 
 

The living room in our new place

Every single person we have encountered has been simply fantastic, bringing humanity and friendship to our new home. Late in January we moved across the hall to a slightly smaller apartment where we can now sleep in the same room, and it has made a huge difference for us. I no longer set the alarm for 3:30am as I have done for so long to check on Maureen, and another big improvement is that the heat actually works much better and can be regulated on individual radiators. We loved our big terrace, but in the winter it was drafty in the living room and Maureen always needed a small electric heater nearby. In this apartment the terrace was made into a veranda, and so we have even more light, the plants love it, and it makes our living room much cozier. Plus we have a working fireplace! 
 

Maureen smiling in the sun

All this to say, our days are filled with tender moments, laughter, joy, making new recipes for Maureen, and we even survived COVID in our helpers’ lives without getting it ourselves (Maureen finally got her third shot which had been scheduled for November). Right now we are recovering from colds and coughs but the antibiotics we just started are working and we’re already feeling better. I am so grateful for every single day. We are truly blessed!

Handicap Access in Rome

As one might imagine, the sampietrini streets of Rome are no place for a person in a wheelchair. As it is, I often wonder how Roman women navigate the historic center in their high heel designer shoes. Now that my mother is in a wheelchair our outings are usually either about a doctor visit or a trip and vacation. But when I saw an ad for a plant sale event at the botanic gardens in the Trastevere neighborhood I had to investigate. 

Sheeba and Maureen

You might be thinking that I have a handicap parking permit so that would make things easy. Um, no. We have been waiting since December for the medical clearance for Maureen’s request of handicap status with the government. You can’t even get a temporary handicap parking permit without that other approval. So for anywhere we go I have to know that I can pull up in the car, unload wheelchair and Maureen with my helper, and go find parking nearby. Next problem is figuring out whether where we want to go has handicap access. For example, we thought of visiting the Niki de Saint Phalle Tarot Garden in Capalbio on our way to the beach this summer, but there is no paved road and only partial access on a gravel pathway. You also need to know if there is a handicap bathroom on site.

 

Beautiful palms in the Orto Botanico

For the Orto Botanico in Rome, the website said all walkways inside the park were wheelchair accessible, and there was a handicap bathroom, and from Google I could see what the entrance looked like to know the car could pull right up to the gate. Rain and thunderstorms were in the forecast, but then the sun came out and I decided to get tickets and go. 

On Sunday the traffic restrictions on the city are lifted so I was able to drive through the tiny bumpy streets of Trastevere up to the entrance, but we still had to navigate a bit of sampietrini. Miraculously, I scored a parking spot on that same street (I can be quite Roman when it comes to claiming a spot others are trying to maneuver into when you got there first). Green Pass and ticket check, and right away there’s a problem. The bar to the right of the entrance has placed a few tables and chairs on the paved sidewalk, and the gravel pathway is too deep with gravel for a wheelchair to navigate safely. Strollers can do it because they weigh a lot less. Someone suggests going over the grass on the other side but we still have to drag the chair through some gravel to cross back to the sidewalk. I let one of the personnel know that this is not exactly accessible, when suddenly a young man appears and offers help. At this point we’re okay, but he insists that he’s working at the bar, and if we need help at any point, to come get him. His charm and kindness wipe away my frustration and off we go. 

 

Hot chilis called Goats Weed

Along the gravel path and adjacent sidewalk are various plant vendors, each with a specialty. There’s one with hot peppers from all over the world, and I recognize the Mexican ones we’ve grown on our terrace this summer. Beautiful orchids, air plants, herbs, and another vendor with hoya plants (I have one of these too). Maureen is having a bumpy ride because there is some gravel on the sidewalk but overall we manage to navigate the crowds, strollers, tour group, and we get to the central fountain. Gravel. So we turn around and go back the way we came.

 

At least we did not encounter another wheelchair on the narrow sidewalk. It didn’t rain, and we had fun for the most part. I think Maureen was glad to get out for a change, even though getting in and out of the car is not exactly easy for her, she’s a good sport about it. 

 

But Rome, you can do better.

How are we? An update.

When we moved to Rome almost four years ago, I started this blog with a series of posts about how we were settling in. I wrote about how we slept, ate, played, cheered up, and ate out. 

Since then, so much has happened. Health setbacks, health recoveries. A global pandemic. The planet healing while everything shut down and we stayed home. Vaccinations. Politics. 

In our own small world with the daily routines of caretaking and the slow steady progress of Alzheimer's Disease, we are still thriving. So here's a little update on how we're doing during these dog days of late August in 90 degree sunny weather in a mostly deserted city. 

How We Sleep

We bought portable A/C units for our bedrooms so we can keep the temperature comfortable at night, and if it gets really hot during the peak hours of the day, we retreat to my bedroom to hang out there. We put guard rails on Maureen's bed that help her get up and sit down, and prevent any falling out of bed during the night. One of these is easy to remove, so we take it with us when we go to the beach for a few nights, and that way I'm not awake all night worrying she might roll out onto the floor. We also take naps. I wake up every night around 3:30am to check on Maureen, and sometimes I need to recover that lost sleep, and Maureen often needs a late morning nap to recover lost sleep during the night (a common problem with late stage Alzheimer's). She also has Teo and her other fidget friends to keep her company if she has trouble falling back asleep.

How We Eat

The Mediterranean Diet has worked miracles for our health. This past year, with the help of my doctor, I lost 20 kilos and greatly improved the results of my bloodwork tests. I was already avoiding gluten, but now I have reduced drinking wine, having sugar (except in my coffee and once in a while in a piece of dark chocolate), and eating snacks that were not so healthy. We got a Kuvings juicer, and make delicious mixes of fruit and vegetable extractions, plus it can also make gelato from frozen fruit and yogurt. I have a lot of minestrone, and we eat more fish which I get from the outdoor market on Fridays. Alessandro sees me coming and points to the best of the daily catch, knowing I can't resist. Maureen still enjoys a hearty breakfast of a large cappuccino, yogurt, fruit, an omelette, and juice every day, and sometimes on the weekends I'll make french toast with bananas or peaches and blueberries. Her diverticulitis is under control, and we keep an eye on her anemia. Maureen needs help eating, but she holds her coffee mug with two hands and sometimes asks for a refill, and we use sturdy plastic glasses for juice or iced tea that she can hold with two hands. Her favorite thing is probably her espresso with panna after lunch. Her face lights up when she sees the little demitasse cup with a tiny handle, and she delicately holds it with thumbs and forefingers and slowly savors every sip. 

How We Play

One of the things that has kept us going these past months of lockdown is the weekly physical therapy session with Gloria, who is such a ray of sunshine and positivity. She has an uncanny intuition about what works for Maureen, and knows how to push just the right amount to persuade her to do more than she does with us during the week. We use a lot of music and singing and laughter to keep it lively, and while Maureen walks slowly with her rolling walker we sing "Daisy, Daisy, give me your answer do. I'm half crazy all for the love of you" to keep her going (well, I sing those words, and Gloria and our helpers hum along as best they can). We also watch a lot of concerts on the internet through our Medici TV subscription, and when the camera work gets up close and you feel you are right there in the performance, Maureen may even break into applause with the audience. It's not quite the same as a live show, but it's a close second. We continue to take short road trips to the beach in Tuscany, and come back rested, rejuvenated, and loaded up with Tuscan treats from our favorite places. We celebrated my 60th birthday at Le Mortelle, an Antinori winery with picturesque views and tasty plates of local produce and cheese to go with their delicious wine. 

How We Cheer Up

I never thought that weekly fresh flowers could be so important to mental well being, but our Flower Market Tuesdays have been sustaining us and our friends on social media all through the dark days of COVID and its aftermath. Our terraces are filled with flowers and plants, and we started growing hot chili peppers and little tomatoes in wooden crates in the summer. I post the arrangements of the wholesale flowers I buy on Tuesdays at the Mercato dei Fiori on Instagram and Facebook and our loyal fans get to enjoy the fun virtually. Maureen doesn't arrange the flowers anymore, but she supervises my work and if I get stuck helps me to improve. Irene has a green thumb and together with Sheeba, they make sure the plants get enough water and TLC to thrive. We love our pine trees and the birds that come and go, and the way the light changes throughout the day. Whenever we feel glum, we find an old movie (especially ones with Fred Astaire) and that usually helps pick up our spirits. 

How We Eat Out

Other than the birthday lunch at Le Mortelle, we haven't eaten out in ages. But just recently, post full vaccinations, and after a surprisingly positive eye doctor check up, we decided to go to our favorite local place, Sugo, for lunch outdoors. The head waiter, Tommaso, was so happy to see Maureen that we took another picture of the two of them (the previous one was from a few years ago). Irene had her first gricia pasta served in a pan (it's like cacio e pepe with crispy guanciale) and she took this very nice picture of me and Maureen. It was positively festive even though Maureen didn't eat much. We brought home the leftovers for dinner. 

By the way, Maureen turns 93 on August 30th, which is also the 4th year anniversary of our arrival in Rome. 

Back to school, online

I have recently had a recurring dream where I decide to enroll in a Ph.D. program. Both in the dreams, and later, upon waking, I tell myself that this is a crazy thing since I already have a Ph.D. and, at the age of 59, there is really no need for me to get another one. However, perhaps I took this recurring dream as a sign that I was eager to learn something new, or maybe it’s been the isolation of this pandemic time that spurred me to take two courses online. I suspect that my parents also influenced me in that my mother took up cello lessons in retirement, while my father took university courses in physics. 

The first was a new offering from the world of Gyrotonics and Gyrokinesis, the forms of exercise I have been doing for over four years after two decades of fidelity to Iyengar yoga. The two share similarities, although Gyrotonics involves equipment, and both require teachers to get specialized certifications in order to teach. The Gyrokinesis course was the first time headquarters offered online learning for those not already certified, and was developed by founder Juliu Horvath and master trainer Miriam Barbosa, who used Gyrokinesis breathing exercises in recovering from weeks of illness with COVID-19. The three-week course offered participants a new series of exercises for cardiovascular health and improvement. 

 

The second course was the first Digital Study Group offered in Italian to educators interested in the Reggio Emilia approach. The weeklong course included 4 live sessions on the Zoom platform, and a wealth of print and digital material for study and discussion. For years, Reggio Emilia hosts delegations of foreign visitors who come to learn about the renowned early childhood practices and theories that have made their municipal schools for children aged 0 to 6 famous around the world, but during the pandemic that was not possible. This digital offering was therefore a new experiment, and there were less than 50 participants. Most were based in Italy, but there were a few from other countries as well. I conducted research in Reggio for my

In 2015 I was part of a panel on Reggio schools when
The Wonder of Learning exhibit came to New York City.

dissertation back in 2002, and have visited the municipal schools many times since, but saw this as an opportunity to update my knowledge and make new connections. 

 

By now most people are familiar with the mishaps and pitfalls of various digital platforms used for meetings and presentations (lawyer-cat-filter, need I say more?). As someone who has deep reservations about online learning in general, and more specifically in cases where in-person interactions are indispensable, I was pleasantly surprised by the quality of these two courses, and my own learning. In fact, it got me thinking about my current role as caretaker, and how there is ample opportunity to create online courses for caretakers that could prove to be quite popular. More on that later. 

 

The fitness world has been hard hit by the restrictions of the global pandemic as sporting events, gyms, pools, and so on have had to close and cancel. Fitness by video is nothing new, however, and instructors took to various platforms offering courses in streaming or through on-demand video with enticing discounts. I was lucky in that my Gyrotonics studio offered weekly options at different times and I ended up doing more exercise than I had been doing prior to the pandemic, albeit not on the Gyrotonics equipment that I used in the studio. The three week course I took was not difficult as I had familiarity with Gyrokinesis and with learning online, although the instructors did not watch participants live (some classes were prerecorded as well). However, feedback from participants meant that the classes added some details and modifications, such as moving closer to the camera to provide a better view or a different angle, and various instructors led follow up classes so participants got to experience a range of approaches. There were a few Q&A opportunities during the three weeks, and feedback was encouraged. No written materials were distributed however, and it turned out that even trainers taking the course could not use it for certification. The videos were available for a week at a time on Vimeo, which facilitated watching for those in different time zones. 

 

I did not practice the gyrokinesis sequences daily during the three weeks. In fact, I didn’t watch every video. My caretaking responsibilities limited my availability during the three week course. But I was a dutiful student in that I created a document with screen shots to remember the sequences and details in the instructors’ descriptions, including things like number of repetitions, breathing techniques, positions on the stool and standing, and so on. As the sequences got more complex, my ability to keep up dwindled. Still, I felt the experience was worthwhile and I still enjoy the sequences as part of my home practice. 

 

The course with the educators from Reggio Emilia was far more complex. For one thing, the participants ranged from beginners new to the approach, to people like me who had years of learning and observing. The designers of the course aimed for a balance of theory and practice, using slideshows with voice over narrative, video clips followed by commentary, and the sort of documentation of project-based learning they are known for. When they opened the sessions to questions, there was usually time for no more than a few before they began to comment and respond, and since some of the questions were, shall we say, thorny issues, many threads were left dangling. For example, one participant questioned how to handle the cultural context in which she was teaching, where contradictory forces of seeking new approaches while remaining chained to cultural norms that were autocratic made synchronicity with the Reggio approach nearly impossible. Participants were also curious about how Reggio teachers handled their isolation from parents and colleagues during the COVID-19 restrictions when they were accustomed to close collaborations, but there wasn’t much time for diverting from the planned agenda. 

 

A detail of my work

On the fourth day, the live session was dedicated to an experience with two atelier teachers. We were divided into two groups to facilitate interaction, and given a list of materials to have on hand. The idea was to have a range of “supports” and “instruments” the former being things like paper, cardboard, fabric, plastic and the latter pens, pencils, paints, charcoal, etc. An in-depth introduction gave us an appreciation for simply noticing the range of results when a support met an instrument. We generated a list of descriptive words for our supports and instruments, and then were given ample time to explore possibilities with our computers sending out images of our workspace and our hands. Instructors then invited us to share what we’d been up to, and we could see a few screens at a time during this participatory sharing. For the first time I felt I was seeing something new on the digital platform, and the instructors helped me appreciate how they were able to do this even with very young students learning from home. I had seen some similar creative approaches from the Lincoln Center Pop Up Classrooms like this one on still life drawing done by my teaching artist friend Barbara Ellmann.   

 

rêvolutions, 2015

On the final day we discussed some documentation of school-based projects, including an outdoor investigation pairing trees with musical instruments made of wood. The students shared profound insights that were deeply moving to me, and as they played the strings of a cello next to a tree, plucking with stems of leaves and listening so carefully to vibrations of sound, I was reminded of artist Céleste Boursier-Mougenot at the 2015 Venice Biennale’s French Pavilion who created an elaborate installation with living trees.   

 

As we wrapped up our final day together, I was struck again by how these amazing educators are light years ahead in their thinking, work ethic, and ability to problem solve, and my admiration for them and the children they teach deepens each time I dive into their world. 

I still have a few weeks of access to videos and some course materials so I plan to keep on learning even though the course has come to an end. I urged the organizers to offer ways for participants to remain in touch through email (for those who welcomed it) and hope to follow up personally with new connections made during the week. 

 

Now, back to caregiving. In contrast, the videos I have seen online are like something from the Dark Ages. It’s almost laughable if it weren’t so pathetic. For example, here’s a well-intentioned short video on moving a patient from bed to wheelchair. Watch, then look at some of the comments.  Yes, it’s a dance all right. Even though my mother can stand and walk, the morning transfer from bed to wheelchair is far from predictable, despite a very consistent routine and verbal directions and physical cues. Let’s say you’re looking for help with something even more complicated, like showering. The Alzheimer experts at UCLA suggest you talk of “spa time” and use battery-powered candles in the bathroom (I’m not kidding). If not obvious from the comments, people are actually desperate for logistical help with these and other problems. I am part of a caregiving group on Facebook where posts asking for advice cover all sorts of topics including: 

Meals and nutrition

Medications and taking vitals regularly

Hygiene

Exercise

Safety and preventing falls

Doctors and medical testing

Handling a crisis or emergency, especially from a distance

Legal and financial issues

Support and self-care for caregivers

Mental stimulation and companionship

 

Any creative video production people out there want to take on this challenge? 

 

To end on a positive note, here is one of my solutions to a problem with sleep disturbance. I learned from a nurse (who said she had learned from a nun) that when Alzheimer’s patients develop a tight grip in one hand (in my case on the catheter tube when my mother was ill) you should give them a cloth to hold onto instead. That became one of my cat’s mouse toys, which was the perfect shape to hold in your hand and fiddle with. Then I read about fidget pillows, with tags and zippers, that keep awake patients busy at night in bed. Inspired by the fun texture of

From the top: Mimi, Teo, Thinking and Luna

microfiber dusting gloves, I started to make creatures for my mother that slowly grew into a sort of bedtime family. In addition to my handmade ones, there are smaller stuffed animals that were added to the group. Her current favorite is a baby hedgehog she named Helen, after her older sister. We make sure Helen is with her throughout the day, and this has helped ease the hand clenching problem. One morning recently, after the getting from bed to wheelchair routine was complete, I reached across the bed for Helen and handed her to my mother saying simply, “Helen.” My mother’s face lit up and she replied, “Sister.” My heart melted. 

It's Spring

There have been many notable markings of time lately. A year since the COVID pandemic brought Italy into total lockdown, and right now most of the country is still dealing with severe restrictions on travel and returning to normalcy. We’re about halfway into the first 100 days of the Biden administration in the US, and over two million people are getting the vaccines. In Italy it’s not quite 150,000 so far. My mother has an appointment for the first Moderna vaccine in early April. Yesterday was the vernal equinox, so now we have the spring to look forward to. 

It’s also been nearly four years since I have been my mother’s caretaker full time. 
 
Given how ill she was about a year ago, I am quite relieved about her amazing recovery, and all signs point to continued good health, notwithstanding she has Alzheimer’s, weak kidneys, heart arrythmia and high blood pressure, plus asthma. 
 
There are many reasons for this miracle.

Arianna and Irene

I have a fantastic squad of female helpers, two full time, one parttime, and a marvelous physical therapist who comes once a week. Maureen and I finally have Italian health coverage, so she has had home visits from her internist, a geriatrician, a nephrologist, and most recently a cardiologist, all free. She has a private doctor who regularly comes to see her, and a private dermatologist who has also done a home visit and helps me to treat her skin cancers through email and photos when feasible. We are eating a healthy Mediterranean diet with freshly prepared meals made at home. We live in a beautiful spacious apartment with two terraces, surrounded by trees and plants and fresh flowers. We listen to music almost constantly, unless we are watching nature or cooking shows on TV. 

I get flowers weekly from
the wholesale market. 

 

Still, the pandemic could have easily brought me into a spiral of depression and anxiety. My life outside the home mostly consists of excursions to buy food or go to the pharmacy. I do everything I can to reduce the risk of exposure to COVID but the risk is ever present and terrifying. My broken ankle and subsequent surgery over a year ago presented a long painstaking healing process that tried my patience more times than I can count. I am often sleep deprived, which feels like having chronic jet lag. For the first time in my life, I enlisted the help of a therapist online recommended by a friend, and she made a big difference in just a few sessions. I decided to focus on my health, and found an endocrinologist who uses nutrition to heal. She helped me lose 17 kilos so far and has gotten my thyroid back into balance with a lower dose of medication. I started doing more gyrokinesis exercise online with my teacher and in my own home practice. Once my ankle was really better I started walking more. I returned to a music project with a friend in Milan and we released a fun electro swing version of Diamonds Are a Girl’s Best Friend on a compilation. Now we’re putting together a collection of swing standards that has been in the works for years. I have a home

 

Singing brings me joy

studio, and I bought myself a guitar for Christmas and started playing my favorite Joni Mitchell songs with a childhood friend who sends me recorded tracks to add to. I discovered Call My Agent, a superb French TV series about an agency for famous actors based in Paris, and managed to not binge watch it but to savor it in weekly episodes the way we used to watch TV. Does all this amount to self-care? Maybe. All I know is caretaking involves caring for your loved one and yourself. You have to do both.

 

In closing, I offer a poem. I don’t write them very often. This one just came to me.

 

crushing two pills

little gestures of caretaking
measure days
3:30am alarms to check on you
that I confess sometimes I ignore
only because I’m so tired I wonder 
if I remembered to set the alarm
that time I switched am and pm meds hoping it wouldn’t be too big of a problem
oof I’m no nurse
but I am brave now about things like first aid trimming hard toenails bloody noses
falling
oh then the catheter 
butt shots
you got better that time
yes I know that your brain is in decline
conversations slip away as I say I don’t know
when I mean I didn’t understand 
even though you clearly had a question that needed an answer
every morning 
every evening
crushing two pills
stirring in yogurt or applesauce

 

Back to school?

It’s been very quiet here in Rome this month. The relentless hot sunny days, when you barely hear a dog barking, the deserted city with neither tourists nor residents, lend an eerie quality to the few left behind, sweating in their face masks and just trying to get through another day.

Against this backdrop, and the daily rituals of caring for my mother who continues to show signs of improvement from a fever and possible lung infection a few weeks ago, I have been thinking about the whole business of reopening schools and universities. Although I now wear the eldercare hat, my teacher identity can’t stop thinking about the impending nightmare of what will happen when and if children, adolescents, and educators return to their school buildings this fall.

 

Let’s recap first though. The short term solution during the height of the COVID-19 worldwide pandemic was a stay-at-home-lockdown, forcing workers and students to do everything online. For some, it was an easy transition. Italians called it “smart working” but most parents struggled to do both work at home and tutoring of students online. Some found the humor in the awkwardness, like this Italian actress who taped some scenes with her two children (watch even if you don’t understand the Italian, the humor is universal) and others who created hilarious commentary on the new busy-at-home-schedules like Italian comic Paolo Camilli. Aside from humor, there were a few other unexpected positive aspects to the world coming to a screeching halt. We discovered the planet could heal surprisingly quickly. We found ways to be grateful despite our fear, and to reach out more in our isolation to others.

 

For some it was a dark time of grieving and loss without the customary comforts and rituals. Many lost their jobs, and some saw their careers in peril, with no clear sense of what would happen next. Theaters, restaurants and bars, stadiums, tourism all shut down; our social lives suddenly existed only in a virtual sense.

 

But I think no one was prepared for what it would mean for our way of life, and for the health of our economies, to shut down schools and universities. These are places we take for granted, like supermarkets and pharmacies (which mostly remained open during the lockdown). We entrust our children to the people that work in education for almost more time than we spend with them at home. The age at which we send children to school keeps dropping too, so that parents of even young babies can return to work. Schools are engines of socialization, humming with group activities from laboratories to sports fields, places for quiet reading or writing, for conferring with a teacher or colleague, for eating and playing and laughing together. Meetings on Zoom and other platforms were a very poor substitute, but everyone tried to make the best of it, if they were able to get online access, which many could not. It was only meant to be temporary. 

 

Now as the death toll from COVID-19 nears 200,000 in the United States, and the economic toll the lockdown has taken comes starkly into view, even as indoor dining and sports stadiums remain forbidden, schools and universities are starting to reopen. The justification has become politicized, with the incompetent administration in Washington D.C. claiming children are not so likely to get or spread the virus, while we know that some are at risk of MIS-C, a severe sometimes fatal complication. The president continues to lie that outbreaks are under control, that plans and procedures for reducing risk are in place and will be effective. UPDATE Sept. 19: College and university cases are growing nationally. New York City's schools delayed reopening again, causing anger, frustration, and confusion. 

 

Some teachers have decided to quit, others to retire early. Some are preparing to go on strike. Many are torn between wanting to return to the work they love and to serve their students, and wanting to protect themselves and their loved ones from the risk of illness, even death. Most are justifiably terrified that they simply don’t have the resources to handle the situations they will face, and that administrators haven’t carefully thought through the scenarios that are likely to play out immediately, leading to chaos and confusion. They fear they will bear the brunt of the blame. No one is really prepared for what to do if there is an outbreak of COVID-19 cases. In fact a freshman at the University of Iowa who tested positive days after arriving faced a horrifying lack of support when she was forced out of her dorm room. 

 

In some countries, provisions have been made for plexiglass cubes around individual desks, for headgear with propeller-like extensions to train children to keep each other at the right distances, even for adjacent classrooms connected by video cameras so the teacher is with half the class and an assistant with the other half, allowing students to spread out. Some districts in the US are proposing hybrid schedules with students alternating in person and at home days, which creates a nightmare for teachers with children of their own, and for those parents who are expected to return to a work environment that is not home-based. Universities, who were already moving many courses online for the convenience and ability to register more students in courses, are more prepared to shift to computer-based classes, even though it is widely acknowledged that learning that way for many subjects is less than ideal. Teacher and renowned blogger and author Mercedes Schneider put it bluntly:

 

“I am the teacher, and I am supposed to limit my movement in my own classroom. Is every conversation with a student to be said loud enough for all to hear? Am I to teach without being able to walk up to my students or have them walk up to me? Apparently that is the expectation. But let’s not pretend that what I will be able to do for my students in my COVID-era classroom is remotely on par with normal teacher-student and student-student interaction.

In short, what I will be offering in my room is a form of distance learning to students who happen to be seated in a space in which they can see me and I can see them.”

A retired teacher friend, Gail DeBonis Richmond, posted on Facebook some comments she has been hearing from colleagues in New York State: 

“We were told we can’t wear scrubs.”

“The ventilation in our school is old and horrible.”

“They’ve laid off custodians and are not rehiring.”

“I have to buy my own cleaning supplies.”

“Kids don’t have to wear masks during instruction.” 

“I was told I WILL be having choir. Instead of 100 kids in choir, they’re breaking it up. I’ll have 85 in one, 15 in the other.” 

“Our faculty was just told there isn’t enough money for sanitizer in classrooms. There will be a dispenser at entrances.”

“I was told I have to clean every student desk in between classes. I’m not sure the PPE I bought for myself is medical grade and will protect me. I’ve never been trained in infectious disease cleaning.”

 

It’s probably even more dire in other situations where extreme funding cuts, political pressure to get back to business as usual, and propaganda believers that the COVID-19 is somehow a hoax abound, make for a toxic mix. Leaving everyone to fend for themselves, coupled with a lack of expert guidance and leadership, is going to lead to many more deaths. How do I know? Look at what happened to the elderly in nursing homes. When the virus arrived, it swept through those places leaving mayhem in its wake. Yes I know we’d like to ignore such unpleasantness. But we know it is true. If this happens to our children and youth and those who seek to educate them, we truly may not recover from the grieving and trauma this will inflict on our society.

So what alternatives are being proposed? Predictably, some administrators are just trying to kick the can down the road, such as this report of principals in Brooklyn from Chalkbeat New York.  In Iowa, where schools defied the governor’s order to reopen, the Associated Press was reporting that administrators could face having their licensure revoked. It’s about to get really ugly out there.

One of the emerging ideas among affluent parents is to create a local pod. I first learned that podding was a trending education jargon term of the moment from the excellent Jennifer Berkshire and her podcast partner Jack Schneider in an August 6^th episode of Have You Heard?. Sit down with a strong drink of choice, listen and learn all about the craze for pandemic pods, opportunity hoarding, worsening inequality issues, and more from the hosts and their superb guests, Jessica Calarco, L’Hereux Lewis-McCoy and Jon Hale. There’s also the June episode on distance learning to listen to after that where they explore present day and historical efforts to teach individuals by correspondence or online. As they say, “learning alone has never worked for the vast majority of students.” I fear that we are already moving backwards thanks to standardized testing. Take, for example, this quote from a 2011 Washington Post article by Marion Brady:

My school board member-friend concluded his email with this: “I can’t escape the conclusion that those of us who are expected to follow through on decisions that have been made for us are doing something ethically questionable.” 

He’s wrong. What they’re being made to do isn’t ethically questionable. It’s ethically unacceptable. Ethically reprehensible. Ethically indefensible.

Think of where we are now nine years later. Drowning in a void.

I think it would be irresponsible of me to leave you on such a bleak note. So here are some of the ideas I have been thinking about, given what we know from researchers like Barbara Rogoff about group learning, especially for children from underserved minority backgrounds:

Outdoor education! We need to rethink the potential of the great outdoors. Forward-thinking schools in places like Reggio Emilia here in Italy, in Sweden, and Finland are taking even very young children outside to learn and to immerse them in exploring the natural world. A recent NYTimes piece on history of educating New York’s children outdoors during flu pandemics from Ginia Bellafante explores whether such ideas would be feasible today in New York City. I am not just talking about laptops outdoors, but creating curriculum and experiences based on outdoor environments both urban, rural, and everything in between. Study wetlands and woods, rivers, tidepools and beaches, help advance awareness of climate change and how to conserve and protect nature and animal habitats. 

Massive effort to involve non-teachers in education! Paid or volunteer, working adults (and those out of work) have much to offer young people. Create a new civic sense of duty to help save public education, appeal to parents, aunts and uncles, grandparents, even the childless. Maybe hours accumulated could count towards greater public assistance for those seeking employment. Have the volunteers work in tandem with expert support; don’t set them up for failure, and you could create an international movement that would energize learning globally.

Cross-grade partnering and tutoring! We know there is much learning in teaching others, even for children. Under adult guidance and supervision, these partnering and tutoring experiences could even count for course credit. Partners can be established online across diverse communities. Check out the AMAZING Creative Arts Team Youth Theatre and their  international collaborations.

 

Learn about food and where it comes from! Inspired by Edible Schoolyard, create vegetable gardens and outdoor food preparation sites for making school meals a curricular opportunity. Learning to prepare food safely during a pandemic is a vital skill for everyone to obtain. 

Arts education is more important than ever! With so many theaters and concert halls and museums closed or with reduced access, now is the perfect time to partner with arts and cultural institutions to create online and in-person outdoor learning experiences that are interactive and designed for group activities. See for example this 2013 video introduction to the work of Lincoln Center Education, which has a long illustrious history of partnerships with artists and schools across the globe. The Lincoln Center YouTube channel has a wealth of resources for at home use from concerts and performances to pop-up workshops. 

 

Now, go get some kids outdoors where there are flowers growing, bring along some simple collage materials and your laptop/tablet/phone, and follow along with teaching artist Barbara Ellmann to make collages of spring flowers. Don’t you feel a little bit better?