CUMBERLAND – Every morning, sometime after 8, Babette O’Dwyer stirs inside the home she shares with her husband, Bartholomew, who has been awake for at least an hour.

It’s a modest one-story ranch in the center of town. In the living room is a picture window facing the road and a solitary tree in the front yard with branches that hold leaves in summer and gather snow in winter. On the wall are pictures of the couple visiting far-flung destinations. Hawaii. Kenya. The Marquesas Islands.

That was then.

Now, Babette spends nearly all her time in that room in a hospital bed.

“How we doing, my love?” Bartholomew greets her with an Irish accent he’s kept since moving here from Dublin in 1997. He is tall and gregarious. He’s 77 but looks younger.

His question to Babette is rhetorical. She can’t answer.

Five years ago, she suffered a stroke and never recovered. Her health declined rapidly, and she was approved for hospice care in the summer of 2018, a sign that her months appeared to be numbered. Bartholomew started to contemplate the unthinkable – a life without her.

There is no easy medical explanation for why Babette, 94, is still alive, but the selfless care of her husband is almost certainly a factor. She can’t walk or feed herself. She can’t communicate beyond a sort of shorthand she has developed with Bartholomew. He changes her bedding and diapers. He feeds her all her meals and makes sure she takes her medications. He sings and recites poetry to her, some he’s written, others from Yeats. Sometimes he just sits with her and holds her hand while they watch TV.

The O’Dwyers have no other family. They married late in life and didn’t have children. The only reprieve Bartholomew has gotten from caring for Babette has been visits by a hospice nurse or assistant.

On July 19, Bartholomew was informed by his hospice provider, Northern Light Home Care & Hospice, that Babette would no longer qualify for services. The reason was simple but cold: Her health wasn’t declining fast enough. Medicare would no longer cover it.

“To me, it’s an absolute disgrace,” he said. “The metrics they used to make this decision are at odds with reality.”

Babette’s case illustrates the challenges and limitations of hospice care in Maine, a state with a rapidly aging population. The service is offered to patients with a terminal illness and a prognosis of six months or less. The care is palliative, meaning the patient is kept as comfortable as possible, but not curative.

A Northern Light spokesperson said the agency could not discuss a specific patient’s care but pointed out that eligibility requirements under Medicare are tightly regulated. It’s meant to be end-of-life care. A regional spokesperson for the Center for Medicare and Medicaid Services also did not respond to a media request Friday about questions involving the O’Dwyers’ case or hospice guidelines.

Although hospice is meant to be temporary, six months is not an automatic cutoff. Many hospice patients live much longer than that. And the criteria for determining eligibility are applied by clinicians based on their professional judgment, not actuarial tables.

Kandyce Powell, longtime executive director of the Maine Hospice Council, said the O’Dwyers’ story is all too familiar. As hospice utilization has increased steadily over the years, so, too, has scrutiny of those benefits. That has caused hospice providers to be judicious about what they provide through Medicare.

Powell said on one hand, the O’Dwyers have been fortunate to receive hospice care for so long.

“But it breaks my heart when I see people struggling out there,” she said.

Kyra Mancini, clinical operations director for Hospice of Southern Maine, said people sometimes have misconceptions about what hospice care is and isn’t.

“A big part of what we do is connect families with resources within the community, to try and help them build a support system,” she said. “But of course, it can be challenging. Patients get really connected to (hospice) teams. … They feel like it’s the only support they have. Hospice is not 24/7 care in the home or even close to that. What hospice tries to do is bolster access to other resources. Still, trying to find support in the home is challenging. It’s not always available, and it’s costly.”

As Bartholomew tries to navigate life without any hospice help, he’s been looking for other options with little success. They don’t qualify for an obvious alternative, at least one that would be covered by Medicare. He’s better equipped now to care for Babette than he was five years ago – in part because he watched and learned from the hospice workers who regularly visited their home – but he’s aging, too.

“No matter what happens, nothing will ever stop my care for Babette,” he said. “And she knows that.”

‘WOULD YOU CARE TO JOIN ME?’

Bartholomew and Babette’s love story traces back to the boxer Mike Tyson.

It was 1997, and Bartholomew had never been to the U.S. He was a big boxing fan and dabbled in amateur boxing as a young man in Ireland. When he saw Tyson was scheduled to fight then-heavyweight champion Evander Holyfield in a rematch of a bout seven months earlier, Bartholomew thought that would be as good an opportunity as any to travel overseas.

Bartholomew came to the U.S. across the Atlantic on the Queen Elizabeth II, a massive ocean liner that traveled between Southampton in the United Kingdom and New York City until 2008. It was on that voyage he met Babette.

Bartholomew is a storyteller, and he delights in sharing this one.

He was sitting in a chair in the Golden Lion pub, having a pint and listening to a band as the ship churned across the water. Three men were in chairs near him, but they had left precisely the moment before Babette walked in. She was traveling on the QEII back from England on one of her many excursions as a travel agent. Her clients were mostly high-end, and the trips were luxurious. She organized so many tours in central Africa they called her “Mama Safari.”

Bartholomew saw her get off the elevator and sit in one of the empty chairs near him.

“It gives me nightmares to think that if those people hadn’t got up off those chairs, where would she have sat?” he said.

They listened to the music together for a time before he made his move.

“I said, ‘Would you care for a drink? Would you care to join me?’ ” he recalled. “We’ve been together ever since.”

Bartholomew still went to the boxing match, which famously ended when Tyson was disqualified for biting off a piece of Holyfield’s ear. He saw the Grand Canyon, spent time in New Orleans and visited his sister, who had immigrated to the U.S. many years earlier and was living in Chicago.

And he came to see Babette in Maine, where she owned her own travel business, Ladd Tours and Cruises. She had been born in Nuremberg, Germany, and lived through World War II as a teenager. She came to the U.S. in the mid-1950s, settled in Maine with her first husband and built her business, which later merged with Hurley Travel in Portland.

Bartholomew returned to Ireland, but only temporarily. Babette started to invite him on trips, and they traveled the world together. He ended up giving his apartment in Dublin to his niece.

“I don’t know what I was doing or was going to do, and this thing all fell into place,” he said.

Bartholomew and Babette married on a beach in Hawaii in 1998 and continued to travel. Bartholomew went to work for Babette’s agency, setting up trips for clients all over the world.

They experienced the Pride of Africa train tour from Cape Town, South Africa, to Dar es Salaam, Tanzania. They traveled by boat to the Marquesas, a chain of islands in French Polynesia in the southern Pacific.

One of their last big trips together was in 2011, a riverboat cruise around Europe.

Bartholomew has a stream-of-consciousness style of speaking. He travels backward and forward in time, across oceans and continents, to tell the story of their marriage.

Things started to change for them in 2014, when Babette suffered a back injury that left her in constant pain. Four years later came her stroke. She spent several weeks in a rehab facility before she was discharged, but the event was debilitating.

Her decline was gradual at first. Her legs gave out, and hospice provided a hospital bed. She’s been in it ever since. Then her speech started to go, and her memory.

For two decades, Bartholomew and Babette had lived a rich and exciting life together. Suddenly, it was on hold. Arrested. Everything is tied to her care.

With Medicare’s hospice benefit, the O’Dwyers have had nurses and aides in the home multiple times a week. They helped with basic care for Babette and support for Bartholomew, too.

Often, the biggest support hospice provided him was a break. Sometimes, it was just to go to the grocery store or run some other errand.

Powell, with the Maine Hospice Council, said she couldn’t address any care decisions by Northern Light but said most of Maine’s providers have good reputations.

In 2019, the Office of Inspector General of the U.S. Department of Health and Human Services reported that more than 80% of hospice programs nationwide were failing in some way, including nearly 20% that demonstrated one or more serious deficiencies. In Maine, 50% of providers surveyed had deficiencies.

Among the deficiencies cited were hospice providers enrolling beneficiaries who were not terminally ill and therefore did not qualify for hospice, underscoring Powell’s point that providers face scrutiny and might be reticent to keep patients on care too long.

Still, she said, providers have a responsibility to work with patients to find other options – something Bartholomew said hasn’t really happened for him.

“With hospice, it’s not just caring for the patient, it’s the others on the team and, in this case, the spouse,” she said. “If we’re not doing that, shame on us.”

‘WE’RE TOGETHER AT LEAST’

For the first year after the stroke, Bartholomew slept on a couch in the living room to be close to Babette. It was hell on his back, but he didn’t know any other way.

“I didn’t want to leave her, you know,” he said.

He still sleeps there sometimes, if Babette is especially anxious or if he feels like she needs him there.

Their home is small and cluttered, the kind of place where household chores have fallen by the wayside. Bartholomew is aware.

“She would have heart failure if she saw how this house was,” he said.

The most time-consuming parts of Bartholomew’s days are when he has to reposition Babette for meals or to watch TV. The hospital bed only reclines to about 45 degrees, so he developed a system involving a lot of pillows and a cardboard box that essentially secures Babette in place.

She has fallen out of bed before, and he goes to great lengths to make sure it doesn’t happen again.

“I just try to find a way for her to have a little normality,” he said. “Cause then we’re together at least. I want to be with her.”

He had an infection in his foot this summer and asked the podiatrist to see him at home so he wouldn’t have to leave Babette. The doctor obliged.

“But what if I have some sort of emergency?” Bartholomew wonders.

Although she can’t communicate, Babette has curious eyes that follow visitors around the house. Her mouth often rests in a slight smile.

As Bartholomew tells stories of how he and Babette met and their travels, he pauses to stroke her hair – a subconscious reminder that he’s there, that she needn’t worry about any strangers in the house.

“She’s the most beautiful person,” he said one day before lunch, fighting back tears. “She is absolutely graceful in every way.”

For several years, through the COVID-19 pandemic even, Babette’s care was steady. Clinicians assessed her health every few months and renewed hospice services.

Mancini, the clinical director for Hospice of Southern Maine, said in her experience, each patient’s care is individualized, but if they demonstrate continued decline, care continues. She said receiving hospice care for more than six months is not the norm, but it’s not rare either.

On Northern Light’s website, there is a frequently asked questions page that includes the question: Can hospice care continue after six months?

“Studies show that engaging hospice care early on can actually prolong life and improve life quality. … The Northern Light Hospice team will continue to provide the same care as long as the qualifying criteria for hospice are met.”

Powell with the Maine Hospice Council said in the early days of hospice, “most providers didn’t blink an eye.” They provided services until a patient died.

“Once reimbursement got involved, things started to change,” Powell said.

Hospice providers are likely feeling pressure to abide by coverage limits, too, because more and more patients are inquiring about services.

A 2022 report by the member-based Home Care & Hospice Alliance of Maine found that hospice utilization in Maine increased from 21% of Medicare patients who died in 2005 to nearly 50% last year. Maine used to lag well behind the national rate but has since caught up.

“Certainly, there is pressure, because (providers) might get denied payment if they don’t follow regulations,” Powell said.

‘WHAT WILL HAPPEN TO HER?’

Last month, without much warning, Bartholomew was handed a letter from Northern Light. On it were handwritten notes from a clinician who concluded Babette was no longer eligible to receive hospice care. There were a set of numbers and an acronym, PPS, which stands for palliative performance scale, a tool used to determine eligibility. Babette’s score was too high.

A week before Bartholomew got the letter, he said a hospice nurse gently suggested that he call an ambulance and have Babette taken to the hospital to see a different doctor who might re-recommend hospice care.

He was incredulous.

“My wife shouldn’t be treated like an animal being hauled off to the vet or something,” he said.

Medicare does provide home health aide services to non-hospice patients, but only if they are getting skilled nursing care or therapy, which Babette is not.

Facing the prospect of losing hospice care, Bartholomew has tried calling around to what else might be available. He left a message with a local agency, Active Living, that had a friendly visitor program. A representative called back last month while a reporter was present.

“We just wanted to let you know that we don’t have that program anymore,” the woman said, explaining that they weren’t getting enough interested volunteers to keep it going.

“Oh,” Bartholomew said, a bit of dejection in his voice. “Thanks for letting me know.”

He’s reached out to the Southern Area Agency on Aging to see if it has any suggestions.

On July 31, he got a message from Northern Light Home Care & Hospice. It was a nurse calling about his appeal of the decision to terminate services.

“The physician has agreed with discharge from the hospice services, so the appeal was lost,” a voice says on the O’Dwyers’ answering machine. “The last cover date was July 21, and financial liability begins on July 22.”

The next week, he got an official letter from Northern Light telling him that Medicare agreed with the decision. The last line of the letter read: “It is ultimately your responsibility to arrange for additional durable medical equipment, personal care services and physician services.”

The official cutoff was supposed to be Sept. 9, but visits by hospice workers have reduced to once a week. Northern Light did provide, with Babette’s discharge papers, a list of organizations that might be able to help. Most are not covered by Medicare and would cost thousands per month.

“Without a doubt, those services are out of reach for most families,” Powell said. “It’s a tragedy in our health care system.”

Bartholomew said he has no qualms with any of the home health aides, who have been “like saints.” He’s just frustrated with the system. He doesn’t understand how someone like Babette, who worked for decades and paid taxes, should have to worry about being taken care of at the end of her life.

Still, he tried not to dwell, at least on that day.

July 31 was also the couple’s 25th wedding anniversary.

He wore a Hawaiian-style shirt with pineapples on it, the same one he wore when they got married. There are fresh flowers in the vase on the table in front of the window.

He bought champagne and a cake to mark the occasion. In frosting, a message read, “Our magnificent 25th B&B.” It’s a pleasant summer night, and the front door to the house is open, allowing a gentle breeze in.

Bartholomew put a straw in Babette’s champagne glass and brought it to her lips. He asks her if she wants a piece of cake. She nods. When she doesn’t want any more, she shakes her head. There is a little pink frosting on her lip at one point, and he wipes it gently with a napkin.

As they eat and drink, he cues up a clip from the 1950s Elvis movie “Blue Hawaii” in which they sing the Hawaiian wedding song. He lets it play and takes her hand. By the chorus, he’s singing along.

“I hope she likes my singing. … I guess I don’t really know,” he said.

She rests her head on his shoulder – maybe because she doesn’t have the strength to hold it up, or maybe because she knows the moment is important and she wants to be close to him.

Although Babette has been removed from hospice care, it doesn’t mean she can’t come back on if circumstances change.

In the meantime, Bartholomew will honor his vow. In sickness and in health.

“The thing that worries me most is that I’ll conk out first,” he says, pausing for a minute to let it sink in. “And then what will happen to her?”

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