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!

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.

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.