East End Hospice Turns Bereavement Support Group Toward COVID-19

It has been five months since Maribeth Edmonds last saw her family overflowing with joy, watching them from her seat at the piano bench as the group sang favorite old songs and traditional carols at her annual Christmas party in Mattituck.

As her fingers floated across the keys, and they traded smiles and bubbled over with laughter, they never once considered the nightmare lurking on the horizon.

It began in January, when a backache landed Ms. Edmonds’s sister, Linda Rini, in the emergency room at Mount Sinai South Nassau, where she was diagnosed with multiple myeloma. Her oncology team reassured the family that they caught it early and, after a period of misery, the 72-year-old would have much life left to live.

When her stay was cut short by the COVID-19 outbreak, and the hospital found itself in dire need of beds, they transferred Ms. Rini to a rehabilitation facility. Ten days later, she was discharged and permitted to return home to Malverne, where she would wait to start her cancer treatments — until she spiked a high fever less than 24 hours later, prompting her sister to immediately call 911.

“She just seemed deeply unwell, disoriented, and the ambulance came — and that’s it,” Ms. Edmonds said. “After that, we never saw her again alive.”

This narrative is an all-too-familiar one for families across the nation who have lost mothers, fathers and siblings, aunts, uncles and cousins, grandparents, children, spouses and beloved friends to COVID-19 — spawning an unprecedented level of grief and trauma that bereavement specialists are just now starting to navigate for those who are left behind in the chaos.

“This is a different world of bereavement that we’re heading into,” explained Jean Behrens, the adult bereavement coordinator at East End Hospice. “I’ve been doing this work for 30 years, and I’ve never seen anything like this. The fact that you can’t go and sit by your mother, or father, or wife, or, sometimes, it’s children? You can’t touch them when they’re dying? It put things into a whole different realm.

“We’ve never dealt with anything like this,” she added. “We realized that we needed to do something, and we needed to do it sooner rather than later.”

The Westhampton Beach-based organization was set to begin offering a bereavement support group to anyone who has experienced a loss due to COVID-19 on May 27. Ms. Behrens, who will act as the facilitator, expects the setting to be a place for its 10 participants to share their frustrations, talk through their grief and find companionship in the process.

The free eight-week Zoom series, to be held on Wednesdays from 4 to 5:30 p.m., dovetails an ongoing support group for frontline workers, an open forum that meets on Tuesdays at 7 p.m.

“I really do think that people do best when they’re in a loss-specific group,” Ms. Behrens said. “It would be very difficult to have someone who had this COVID death with someone who maybe lost their grandmother, or a very elderly parent, because there’s so many added dynamics to it.

“The real help is going to be just the fact that they’re sitting among nine other people who have just been through this whirlwind,” she continued. “The hope is that they’ll have each other.”

Suffolk County has seen nearly 1,300 coronavirus deaths out of more than 35,000 confirmed cases — leaving a sea of mourners in its wake, including the Wienclawskis. When County Executive Steve Bellone offered his condolences to the friends and family of a 65-year-old man who recently died at Stony Brook Southampton Hospital, they knew exactly who that was.

For Lauren Wienclawski, it was her uncle. And for her mother, Eileen, it was her brother.

“It’s very hard to know that he’s a statistic of this virus,” the elder Ms. Wienclawski said during a telephone interview from her home in Hampton Bays. “It’s a very strange, surreal feeling, that he’s one of the statistics that they talk about every day on the news.”

On March 20, John Carroll was rushed to the hospital and diagnosed with bilateral pneumonia, and promptly moved to the ICU for observation. Within hours, he was intubated. And exactly a week later, he died from complications due to the novel coronavirus.

“It was just so quick. He was talking that day,” recalled Lauren Wienclawski, who works as an administrative professional at East End Hospice. “He was a little confused, for sure, but it seemed as though his numbers popped up a little bit, he was doing better, and then it was a quick decline after that.

“Some people that I speak to, they had similar situations where you have a glimpse of hope for a short period of time, and then it was a quick decline,” she continued. “In the course of a week, he was walking and talking, and then all of a sudden, gone.”

Before the hospital staff removed Mr. Carroll’s ventilator, they called the family — giving them each a moment to have their final words with him. The gesture was “unbelievable,” Lauren Wienclawski said, as was the drive-by tribute that one of her mother’s best friends arranged, in place of the funeral they couldn’t have.

About 90 cars showed up, packed with the faces that brought Mr. Carroll the most happiness throughout his life, some even blaring his favorite music, including The Allman Brothers Band.

But now that the dust has settled, the Wienclawskis are left to deal with their own emotions and sort through their grief — for the most part, alone.

“One of the worst things is that I still haven’t given my parents a hug, because I’m scared that they’re gonna get it,” Eileen Wienclawski said.

“There’s no words for that,” her daughter said. “We all feel that, all of us. That’s one of the weirdest things: not being able to hug the ones you love most, especially when you know they need it the most.”

The inability for families to physically console one another, hold burial ceremonies, make informed decisions about life support, or even sit by the bedsides of their sick loved ones during their final days will inevitably inform the grieving process, according to Mary Crosby, president and CEO of East End Hospice.

“When COVID hit and we started to experience caring for these patients, hearing stories about what was happening in the hospitals, we quickly realized that there was going to be a different kind of grief here, and that that grief would have almost an element of trauma because of the restrictions in visitation and the struggles with families not being able to see their loved ones, or have the closure you might normally have,” she said. “I think it really is a very unique situation. It’s also, in it of itself, anxiety provoking, but then you have this entire pandemic happening. It’s a really difficult time for people.”

For the last three days that Ms. Rini was under the care of Mercy Medical Center, Ms. Edmonds said she had an “awful feeling.” Her sister had stopped returning her calls and FaceTime requests. Her uplifting messages went unanswered. And when she finally did get her on the phone, she sounded lost, frightened that her family had moved away.

Ms. Edmonds did her best to reassure her.

“Don’t worry, Lin,” she recalled saying. “We’re getting ready for you. You’re coming home, we can’t wait. We’re counting down the moments, we’re all here. Do you recognize me? It’s me, Maribeth — your girl.”

“Yes, I recognize you,” her sister had replied.

“Do you believe me?”

“Yes, I believe you.”

“Do you love me?”

“Yes, I love you.”

“I love you, too,” Ms. Edmonds said to her. “You’re coming home. You’re coming home to me.”

From her home in Mattituck, she took a deep breath as she relived the memory. “That’s the last time I spoke to her,” she said. “And I feel terrible because I lied.”

A sob ripped through her. “I didn’t know I was lying,” she cried. “I meant it at the time. I tried so hard to reassure her that her suffering would come to an end, and this terrible place that she was living in, this terrible feeling that she must be having, would be over soon. And she’d come home.”

Three days after their conversation, on April 8, the doctors called Ms. Edmonds to tell her that her sister was getting stronger and they were preparing to send her home. Twenty minutes later, another call came.

Ms. Rini had suffered a fatal heart attack.

“Not being able to see her, not being able to be with her when she died, not being able to sit with her and hold her hand, not being able to pray for her or be with her, it’s so painful, just so heartbreaking,” Ms. Edmonds said. “I just feel like the absence of us, of our touch, of our voices, of our reassuring presence, it was like taking an anchor away from her — and she was just cast adrift in this terrible scary world of pain and confusion and, ultimately, death.”

The funeral unfolded on Ms. Rini’s front lawn, on the block she had lived most of her life. Neighbors came out of their houses with masks on, friends drove up in their cars, and her family members stood 6 feet apart from one another as a priest led the service. They recited prayers, played hymns out of a small boom box and rang antique bells to say goodbye.

“Each of us had to be standing by ourselves, just shaking and crying without being able to touch each other, or hug each other,” Ms. Edmonds said. “That day was so surreal, and I haven’t seen any of them since. It just feels so detached and unsatisfying and lonesome. It’s a lonely grief.”

Every day since, Ms. Edmonds said she has asked herself, “Where was the mistake?” often oscillating between blame and reason, which Ms. Crosby said is common for those in mourning.

“If I had to guess, I would say that a lot of that is gonna come out in our bereavement groups with COVID families,” she said. “With everything that’s going on, on a larger scale, there will be a lot of emotion around what other people are doing. People who have lost a loved one from COVID, generally, have a lot of emotion around other people not wearing masks, or protesting, or not social distancing, because they’ve seen it firsthand.”

What has been a devastating event for the family is dominated by lonesomeness for Ms. Edmonds, who plans on joining the East End Hospice bereavement group. “It’s a terrible thing to have somebody just get gobbled up by something and you never see them again,” she said. “You never touch them again. You never lay eyes on them again.”

She sighed, collecting herself. “My sister … she was wonderful,” she said. “She was a loving, gentle soul, a lover of peace on earth. She just was a sweetheart. She was my person.”

To register for East End Hospice’s COVID-19 bereavement support group, email Jean Behrens at jbehrens@eeh.org, or call 631-288-8400. All voicemails are private and confidential. For more information about East End Hospice, visit eeh.org.