But last year, Coleman’s radiation treatments for lung cancer left her weak and struggling with heart failure. Mastromano had retired from her job as a court clerk in Nassau County four years earlier to care for her mother full time, but as Coleman’s health spiraled and her dementia worsened, it became too much for her daughter to handle.
Mastromano found a senior home just a few minutes away, a skilled nursing facility called Maria Regina Residence, and in July, her mother moved in. Mastromano was there for every meal and returned each night to help her mom calm down before bed. In the evenings, even with medication, Coleman’s dementia sometimes made her hallucinate, Mastromano said. Some nights, she believed she’d been set on fire. Other times, she thought she was being raped.
“This has been a nightmare,” Mastromano said. “Each day is different, and each moment in time is different to her mind. At least sometimes, when she held my hand, she felt comfort.”
But then, on March 12, Mastromano learned that the nursing home — like thousands of others across the country — was suspending visiting hours in the hopes of preventing a coronavirus outbreak among vulnerable residents. Initially, the staff assured Mastromano that the restrictions wouldn’t apply to her because her mother was in hospice. But when she came to see her mother the next day, a nursing supervisor stopped her.
“Oh, no,” Mastromano remembered the woman telling her. “Betty Coleman is not actively dying.”
Mastromano said she got upset.
“You realize that I never said goodbye,” she remembers saying. “I will probably never see her again.”
Brenda Burton, administrator for Maria Regina Residence, said it was difficult when state health officials mandated visitor restrictions at nursing homes last month, but the center’s priority is protecting its elderly residents.
“The importance of families and visitors to our residents cannot be quantified,” Burton said in a statement. “They are essential to the social well-being of our residents and they are our partners in care. We monitor our residents daily not only for their physical health, but for their emotional health.”
At the urging of nursing home staff, Mastromano bought a tablet so that her mother, who is legally blind, could video chat with her once a day. But the arrangement proved difficult.
“For the first week or so, it was not terrible,” Mastromano said. “She didn’t quite understand what was going on, but she could hear me and I could talk to her. But then Mom started getting more and more confused by it.”
Their struggle highlights how, despite well-meaning campaigns calling for the public to donate devices to hospitals hit hard by the coronavirus, saying goodbye via an iPad is a complicated substitute for being at someone’s bedside. In many cases, dying patients are unconscious or sedated, with a ventilator tube in their airway. Some have neurodegenerative disorders, making it difficult or impossible to communicate via video feed.
“They can’t talk and are basically comatose. In those cases, FaceTime is pretty pointless, although you can at least show the family member that their loved one is comfortable” said Dr. J. Randall Curtis, a palliative care physician in Seattle, who has conducted research on what makes for a good end-of-life experience.
Since most volunteers, medical students and family members have been banned from hospitals and hospices, digital goodbyes also create additional tasks for overworked health care workers. Who is going to hold the device or answer calls?
Even after several attempts went poorly, Mastromano wanted to keep trying. She was desperate to see her mother each day.
But after the nursing home’s first confirmed coronavirus case a couple weeks ago, it seemed like staff became too busy to set up the tablet for her mother, Mastromano said. Even phone calls became unworkable. A nursing aide would hand her mother the phone, then walk away.
Her mother kept losing her grip or holding the device upside down. Mastromano would sit on the line, sometimes for 20 or 30 minutes, listening to her mother scream.
She could tell from the sound of her voice, her mom was losing her strength.
“What I really needed,” Mastromano said, “was to hold her hand.”
Comforting the dying
People have been dying alone long before the coronavirus, though not usually so often. Some have no close friends or families. Others live far from family. In those cases, patients or loved ones can request a volunteer from an organization called No One Dies Alone to sit with them during their last moments.
When a patient is near death, the program’s volunteers — including medical students and spiritual care practitioners — take turns spending a few hours by their bedside. They might talk or read to them, light candles, play music and mop their brow.
“Being with someone when they die is a very intimate space. It’s like being the best man at someone’s wedding or being at the birth of someone’s child,” said Jared Raikin, a second year medical student at Thomas Jefferson University’s Sidney Kimmel Medical College in Philadelphia, and a volunteer with the group.
But in mid-March, all No One Dies Alone programs across the United States were halted in an effort to prevent the spread of the coronavirus, keep volunteers safe, and avoid wasting medical masks, gloves and gowns, which have been in short supply nationally. It’s a huge blow to the volunteers, and to the growing number of ailing patients in need of their kindness.
“It’s heartbreaking,” Raikin said. “One of the main goals of the organization is to minimize the number of patients who need to die alone, but it’s growing and growing and growing, and there isn’t a lot we can do about it.”
In addition to providing emotional support, these volunteers look for signs of discomfort, such as grimacing or labored breathing. Melissa Helmkamp, 37, a stay-at-home mom and No One Dies Alone volunteer from St. Louis, Missouri, has had to call nurses for more pain relief for about half of the dying patients she has sat with.
“I had one patient who actually woke up and was very afraid,” Helmkamp said. “She was asking, ‘Help, help, help,’ and we had to get her medicine adjusted immediately. If nobody was there, the patient would have likely fallen out of bed.”
Dr. Wesley Ely, a critical care physician who works with geriatric patients at Nashville’s Vanderbilt University Medical Center, said one of the most important aspects of his job is comforting people as they die. That means sitting with them, holding their hand and asking them what they loved most about life.
Before the pandemic, he would sometimes offer dying patients a spoonful of honey, a small gesture, he said, “just to demonstrate love and affection and something very human.”
“When you are dying, honey is so uncomplicated. They can’t aspirate on it. It tastes sweet and there is this human-to-human connection,” Ely said. “There’s no honey on a spoon now, and that’s tremendously heartbreaking. It’s all you had to offer this dying person, and now that’s gone.”
Mastromano cried in bed last Sunday night after the doctor told her that her mother was fading. The next morning, she got a call from one of the nurses.
“She said, ‘I don’t like the way this looks, Debbie. I want you to get down here,’” Mastromano said.