Advertisement

Comforting the dying and their families — from a distance

Hospice chaplains have become surrogates for loved ones and counselors to the caregivers.
 
At Suncoast, Victoria Long talks with a hospice resident. She misses smiling at patients and holding their hands.
At Suncoast, Victoria Long talks with a hospice resident. She misses smiling at patients and holding their hands. [ JOHN PENDYGRAFT | Times ]
Published May 23, 2020|Updated May 26, 2020

She gets to work early these days, now that there’s so much more need. When she turns into the empty parking lot at the hospice care center, the sun is just starting to brighten the sky.

She pulls on her mask and heads into the one-story brick building where a nurse takes her temperature. The long halls are empty. Normally, patients’ families would be napping on the sofas in the Hearth Room, praying in the chapel, sitting beside relatives’ beds. But for the last two months, the common rooms have been closed, the chapel shuttered.

Dying people are alone. Except for the hospice staff.

Victoria Long walks into her office and logs onto her laptop to see who has passed, who came in, who she can help. A spreadsheet called “House Census” offers a daily update: Two patients died overnight. Four people were admitted. One man’s sister is requesting a priest, a nurse wrote in the chart.

At 7:30 a.m., Long calls her friend, the Rev. Kevin Yarnell from Sacred Heart. Can you come quickly? The man’s sister is Catholic and wants him to have last rites.

As a chaplain at Suncoast Hospice’s mid-county care center, Long tries to make sure every patient gets the spiritual help they need at the end of their lives. She doesn’t try to save people or convert them. Just find peace.

When the coronavirus struck in early March, and hospitals barred visitors, many families moved terminally ill relatives into Suncoast’s care center instead. The 40-room facility in Pinellas Park usually operates at about half-capacity. But by late March, all the beds were full.

Some patients who have COVID-19 come from nursing homes, others from hospitals. They’re placed in “isolation rooms” at Suncoast’s three care centers. At each one, a nurse asks visitors about their health, their their travels and takes their temperatures.

In early April, the care center started limiting visitors. Relatives are only allowed to get the patient settled during a “tuck-in visit” and at the very end, when a doctor determines the person is about to die.

Long misses smiling at patients without a mask, holding their hands. She got a grant to buy four iPads for the chaplains and learned to Zoom, so she can connect patients with grandkids. She helps families set chairs outside relatives’ windows, so they can at least wave good-bye.

She also ministers to patients’ families — mostly by phone now. And since visits are so restricted, she’s sitting in for many as a surrogate. “I can’t replace the patients’ loved ones,” she says. “But I can be there by their bedsides.”

***

Long, 61, was brought up Southern Baptist and never dreamed a woman could become a minister. She worked as an intensive care nurse while she and her husband were raising their two children. Once the kids were grown — when she was in her 40s — she decided instead of tending bodies, she would nurture souls and enrolled in seminary.

For five years, she served the congregation at Pass-a-Grille Community Church. Then a friend suggested she combine nursing and ministry, so she contacted Suncoast Hospice, which has been in Pinellas County for 43 years.

She worked on a care team at first, visiting patients in their homes. Then she transferred to the care center, where people only come when they are in too much pain to stay home or their families can no longer care for them. Most patients die within a week of arrival.

“As soon as I stepped into this world, I knew I had found my space,” Long says. “I love the pace, all the people, having to build trust and relationships so quickly.” Every week, she ministers to at least 20 patients and their families. “It’s an honor to take that final journey with them.”

Volunteers who used to sit with patients are now barred from the building, too. So hospice doctors, nurses and social workers have taken on those roles. And “spiritual care givers” like Long are trying to take care of their co-workers.

“They’re working extra shifts, working harder while they’re here, worrying about spouses who lost jobs, trying to virtually school their kids, anxious about their elderly parents and even about buying groceries,” she says.

“I tell them to be kind to themselves, don’t worry about little things like laundry.

“I tell them: Things will change. This won’t be forever.”

She tries to look after herself, too. Walking her two dogs at the beach, kayaking in Boca Ciega Bay, drinking a martini at sunset. She and her husband are planning a summer escape, driving their camper to Colorado. But for now, she’s working long days, trying to be present. So many are struggling, strangers and friends.

By her desk, Long keeps lessons and reminders from people she has cared for. "There is a lot of wisdom coming from them," she said. [ JOHN PENDYGRAFT | Times ]

***

At 9 a.m., Long prints a copy of the spreadsheet, pulls up her mask and rearranges the Hearth Room -- sliding the armchairs 6 feet apart. She greets the doctor and social worker as they sit. For the next hour, nurses give updates on each patient, sharing their diagnosis, symptoms, physical and mental states, whether they want spiritual counseling.

Long nods and takes notes, plotting her day.

In hospice, she says, you see folks of every demographic, every background, every income. Some crave salvation. Others are atheists. Some are ready to die. Others fight the inevitable.

A 49-year-old man with lung cancer came in yesterday, one nurse reports. It had spread to his brain, leaving him confused and combative. “He keeps pleading,” the nurse says. “He wants to go home.”

A 73-year-old homeless man who has breathing trouble has been there for six days. A hospital discharged him. He isn’t dying but has nowhere to go. Nursing homes won’t take him until he tests negative — twice — for the coronavirus. The social worker says, “Swab that nose!”

A 75-year-old woman, admitted the day before, is restless, in pain, dying of sepsis. “She seems imminent,” says the nurse. Long writes: “Call husband.”

Another patient has kidney failure and stopped taking dialysis. Doctors predicted death in 10 days. “This is an unusual case,” the doctor says. The person already planned their funeral and doesn’t seem upset that the end is near. Long circles the room number: 49.

***

“Hi, I’m Victoria. I’m glad to see you’re resting,” she tells the woman with sepsis, just after 10 a.m. Long squirts hand sanitizer into her palm, rubs her hands, bends over the railed bed. The sheet is balled up beneath the patient’s cheek. She’s grimacing.

Long steps into the hall, pulls on purple gloves, then returns. The woman seems like she’s asleep, but Long assumes she can hear her. “Is this better?” asks the chaplain, folding the covers away from the patient’s face. “You just get comfortable. I’m going to call your husband and see if he can come be with you.”

The woman doesn’t respond.

Back in her office, Long hangs up her mask and makes the call. “Good morning!” she says and introduces herself. “I just checked on your wife, she’s quiet and resting. If you want to come be with her, you can come back today.”

The man seems surprised. He thought he couldn’t visit. “How are you doing?” Long asks. “How long have you been married? … Oh, that’s a long time to be with one woman. Oh, you want 30 more years? I’m so sorry.”

She asks how they met, about his wife’s personality, how long he has cared for her. Eventually, she asks about religion. My wife is Catholic, the man says. So am I. “Would she want to be anointed by a priest?” Long asks. Silence, then she hears a slight sob. “Would that be important to her? Or to you?”

Before she calls Father Kevin, she checks the spreadsheet. The man whose sister had requested last rites has died. “You got there just in time for him,” Long tells the priest. “I hate to bother you again, when you were already here today. But we have a woman who’s imminent, whose husband would like a priest.”

***

Long eats lunch in her office cubicle, salad and carrot sticks. On Mondays, she joins other hospice chaplains to share stories and a meal. They used to meet in person. Now, they Zoom. It’s not the same, of course, but Long says it helps seeing all their faces, communing with others who deal with death every day.

“Most people don’t talk about dying. Don’t want to. Don’t know how,” she says. “But we get fulfillment trying to help people. Most people aren’t fearful of dying. But they are fearful of not mattering, of no one knowing their story. It’s such a privilege when they ask, ‘Can I tell you something I’ve never told anyone before?’

“I wish we could look at death like we do birth — and celebrate it.”

She has patients who see their dead mothers, who envision their future as a black hole. She helps some rediscover their faith. Many just want her to pray with them. She learns something, she says, from each encounter.

Sometimes, patients ask her, “What comes next?” She always answers, truthfully, “I don’t know.”

***

Just after 1 p.m., she opens the door of Room 49. The patient is propped on pillows, watching the Hallmark Channel. On a whiteboard, nurses have filled in the blanks: Your goals today: “Comfort.” We’d like you to know: “We care.”

When Long approaches the bed, the patient tries to sit up.

“The doctor says you are a very enlightened person. He called you ‘special,’ ” Long says. She wants to lean in, touch the patient’s hand. But she stays back, social distancing, only able to emote with her eyes.

“It’s simple, if you believe in reincarnation,” says the patient. “Which I do. This isn’t my first rodeo. It won’t be my last.”

Behind her mask, Long smiles. The patient, who doesn’t want to share their name or age, seems so confident, not at all concerned about dying. “Where did life start for you?” asks the chaplain. “Tell me about your journey.”

The patient grew up in Rhode Island, then, when Dad died, moved to Florida with Mom. Got kidney disease last year. “It came quick to where I couldn’t walk. I’m not getting better. I’m getting worse,” says the patient. “But I kind of accept that. I’m ready to see what it is when I come back. It’s not what they tell you in church.”

The chaplain nods and asks, “What did you have to unlearn?”

“Oh, that you die and just go to heaven.”

For a half-hour, they talk about books on reincarnation, websites studied, lectures watched.

“You’re a seeker,” Long says. “You’re able to unpack all the things you thought you knew and find your own meaning.”

The patient stretches both hands toward the chaplain and says: “I’m just resigned. What else can I do?” “You can keep doing what you’re doing,” says the chaplain. “Keep believing.”

“Thank you,” says the patient, sinking back into the pillows.

“No, thank you,” Long says. “You’ve given me a lot to think about.”

The chaplain walks out of Room 49. And leaves the door open.

Long poses in the hospice chapel, which has been closed for the last few weeks. [ JOHN PENDYGRAFT | Times ]

Editor’s note: A previous version of this story mistakenly said COVID-19 patients were not admitted to the hospice care centers. That information came from a Suncoast employee.

A COMMUNAL MEMORIAL SERVICE

“For so many people, grief is on hold.” — Jim Andrews, director of spiritual care at Suncoast Hospice / Empath Health

Since so many families have not been able to schedule funerals during this pandemic, Suncoast Hospice is holding a virtual memorial service on Facebook Live. Your loved one could have died of any cause, anywhere — it doesn’t have to be the coronavirus or in hospice or even Florida. Send in the person’s name and a chaplain will read it aloud and toll a bell to celebrate their life. The service will include music and non-denominational reflections.

When: Thursday, May 28, at 4 p.m.

Register: SuncoastHospice.org/Distance

Watch: https://www.facebook.com/suncoasthospice.org/