Coronavirus compounds grief for those in hospice

APRIL 14, 2020 | 5 AM

Over the past six years, Gary and Sharon Caradonna have weathered his heart transplant and her worsening dementia, together, side by side. But now, for the first time in their 23-year marriage, they are separated. Sharon is receiving hospice care and living at an Escondido memory care facility, while Gary remains in their Rancho Bernardo home after receiving care for his own health issues. He can no longer visit his wife due to county health orders barring family from entering assisted living facilities.

“I’m locked out and can’t see her,” Gary said. “That’s after putting her in a new place that I knew very little about. After caring for her the way that I did with my caregivers, I’m wondering if they are going to take care of her the same way there.”

As the COVID-19 pandemic continues to reshape society, it’s changing the ways people receive hospice care, and adding to the emotional burdens of their caregiving family members.

For people who have a terminal illness with a limited prognosis, hospice supports them with palliative, end-of-life care to help them feel more comfortable. A typical team is comprised of a physician, nurse, nurses aids, social workers, spiritual guide or chaplain, and other volunteers to help provide companionship.

In San Diego County, there are about 4,000 people receiving hospice on any given day and approximately 16,000 receiving care each year, said Lisa Marcolongo, media relations and veteran’s specialist for The Elizabeth Hospice. According to the National Hospice and Palliative Care Organization, 45.2 percent of Californian Medicare recipients who died in 2017 were enrolled in hospice services at the time of death.

Hospice not only cares for the primary patient, it also gives family caregivers a form of respite, and provides them with grief counseling as the health condition worsens.

While coronavirus has disrupted many regularly occurring events in recent weeks, hospice teams have been finding new ways to connect with patients and their families.

At Seasons Hospice & Palliative Care, a national organization with a location in San Diego, the team is serving as a bridge between families and their loved ones who they’re unable to visit, said Yelena Zatulovsky, vice president of patient experience.

“I think the greatest challenges that we’re having and seeing is the increased anxieties and fears around being at the bedside for our patients and families,” Zatulovsky said. “But fundamentally this is a vulnerable population and we’ve always been serving this vulnerable population.

“So irrespective of what’s happening nationwide, irrespective of the pandemic in and of itself, our hospice patients have always and will always continue to deserve a tranquil and supportive environment regardless of those larger events.”

The staff is helping to record last words from patients and arranging virtual memorial services while it’s unsafe to have large gatherings in person.

Hospice care is providing familiar faces in unfamiliar times

Gary and his wife met while their sons were playing Little League together in the mid-90s. A few years later, in October 1997, the pair married and blended together their families of two sons each.

Before he had a heart transplant six years ago, Gary started noticing some subtle changes in his wife. She frequently repeated stories, but it wasn’t until after his operation that symptoms of dementia became more apparent.

Until February, 70-year-old Gary was the primary caregiver for Sharon, who at 68 is now is in the later stages of dementia and has been receiving hospice care for more than a year. When he was treated for blood clots related to his transplant, it became too difficult for him to maintain his own health while caring for her full-time.

Since then, she has been living in a memory care facility in Escondido and still receiving care from her long-time hospice team several days a week.

In addition to restricting family visits, the facility has also limited how often hospice staff can visit to once every two weeks, and then only a skilled nurse can come, in hopes of preventing residents from becoming infected.

At a time when he can’t see his wife in-person, Gary is thankful that at the very least Sharon’s hospice care team is able to continue visiting with her, albeit much less frequently than before the pandemic.

The Elizabeth Hospice, the organization Sharon receives care from, has adapted to social distancing by moving some visits, including grief counseling, to virtual formats like phone or video conference, said Darlene Rutledge, chief clinical officer.

The staff is screened for temperature, potential risk and symptoms every morning, as are the hospice clients before visits. Those on staff also receive a daily “COVID Corner” newsletter to keep them up to date on the latest protocols, especially in regards to the use of personal protective equipment.

“People are feeling isolated at this point, and I think that when we are able to visit (in-person), we do visit versus the virtual visit,” Rutledge said. “Our social workers, chaplains, nurses and nurses aides are out there and ready to serve the patients. I think that we play a part in taking care of the community’s sickest patients, but also help with that isolation of being at home.”

The in-house task force also meets daily to determine what new policies the county, state and federal government have put in place and what guidelines have changed.

Gary said his wife can’t really talk anymore, and she might not always remember someone’s face when they come to visit. But after more than two decades of being at her side, he worries how she’s coping without him.

But he believes that having her hospice team, who had worked with her consistently prior to the pandemic, means someone familiar with Sharon’s condition is there for her when he can’t be.

“Not having my hospice team there is like a big hit for me because they’d been with her for a year, so they know her condition inside and out,” Gary said. “It’s not to say that they don’t have adequate care over there; it’s just that my folks were familiar with her wound and her care and what she did and how she ate, her vitals and all of those things.”

For other families of those on hospice, they worry their loved ones living in residential care facilities might die alone due to restrictions on visitations.

Seasons Hospice has been working with individuals and their facilities to set up protocols for when someone starts to transition into death, Zatulovsky said.

In some cases, that means moving individuals to specific rooms where families may come to say goodbye. For others, it might mean a hospice worker or nursing home staff will be there with them.

“In the context of the current scenario we’re living in, what does that good death look like, and how do we promote having somebody at bedside with them so that they aren’t dying alone?” Zatulovsky said.

Though adaptations are being made to safely provide care, she stressed that it’s important to stay emotionally connected with loved ones, even when you can’t see them in person.

“Social distancing and spatial distancing does not necessarily equate to the idea of emotional distancing,” Zatulovsky said. “We’re trying to find and build ways to promote emotional connection despite all of this.”

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