Facebook Live: Helping COVID’s Secondary Victims: Grieving Families and Friends

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The coronavirus pandemic has killed more than 246,000 people in the U.S., but it also has left hundreds of thousands of others grieving, and often feeling as if they have been robbed of the usual methods for dealing with the loss. For every person who dies of the virus, nine close family members are affected, researchers estimate. In addition to deep sadness, the ripple effects may linger for years as survivors deal with traumatic stress, anxiety, guilt and regret.

As the holidays approach, millions of people will be experiencing these losses afresh, as well as disruptions to comforting routines and beloved traditions.

Judith Graham, author of KHN’s Navigating Aging column, hosted a discussion on these unprecedented losses and dealing with the bereavement on Facebook Live on Monday. She was joined by Holly Prigerson, co-director of the Center for Research on End-of-Life Care at Weill Cornell Medicine in New York City, and Diane Snyder-Cowan, leader of the bereavement professionals steering committee of the National Council of Hospice and Palliative Professionals.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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We Put Off Planning, Until My Father-in-Law’s Medical Crisis Took Us by Surprise

Earlier this month, my husband picked up the phone and learned his 92-year-old father had been taken to the hospital that morning, feeling sick and short of breath.

We were nearly 2,000 miles away, on a vacation in the mountains of southern Colorado.

No, it wasn’t COVID-19. My father-in-law, Mel, who has diabetes, high blood pressure and kidney disease, was suffering from fluid buildup in his legs and around his lungs and excruciating knee pain. Intravenous medications and steroid injections were administered, and he responded well.

Doctors monitored Mel carefully, adjusted his medications and recommended a few weeks of home health care after eight days in the hospital.

In other words, this was not a life-threatening emergency. Yet we realized how poorly prepared we were for a real crisis, should one arise. We needed a plan.

Why didn’t we have one already? The usual reasons: denial, avoidance and wishful thinking. It was easier to imagine that Mel would be all right until it became clear that we couldn’t take that for granted.

Although I routinely advise readers about preparing for changes in their health, I didn’t want to be a know-it-all with my husband’s family. Their assumption seemed to be “We’ll deal with whatever comes up when that happens.”

Now, eyes wide open, we got organized.

Some background: Mel lives in a well-run continuing care retirement community in upstate New York, in the independent living section. His three sons all live at a distance: one out West, one overseas and one a few hours away.

Hiring a care manager. Last year, as Mel’s kidney function declined, I suggested we hire a geriatric care manager who could look in on him regularly. After a few visits, Mel let her go. Her services were too expensive, he complained. In truth, we understood, he didn’t want someone interfering in his affairs.

My husband respects his father’s autonomy and didn’t press the point.

So, when Mel went to the hospital a few weeks ago, he was alone, with no one to turn to for assistance.

This was especially problematic because Mel has hearing loss and it is almost impossible to talk with him by phone. “How are you, Dad?” my husband yelled on twice-a-day calls to check on his father in the hospital. “What?” Mel replied querulously. This was repeated a few times, with mounting frustration and no useful information exchanged.

Now a care manager who could serve as our eyes and ears on the ground was necessary, not optional, and we hired back the professional we’d already found.

Finding companion care. What kind of assistance was Mel going to need when he left the hospital, deconditioned and weaker than when he went in?

When we spoke with the physician overseeing Mel’s care in the hospital, he suggested that “companion care” for at least a few weeks would be a good idea. Mel needed someone to help him up out of the chair, stay at his side while he walked to the bathroom and bring him a glass of water, among other tasks. (Also, we realized, we needed to arrange for meals to be delivered to Mel and for someone from his senior community to buy groceries for him — a service they’d started during the pandemic.)

An excellent organization that works with older adults in Mel’s area supplied me with a list of 21 agencies that provide these kinds of services — a dizzying array of choices.

Fortunately, the senior community where Mel lives recommended an agency that often works with its residents. We hired 24/7 care for several days after Mel left the hospital with the understanding that we’d continue services if necessary. Now, this agency is on our list of essential resources.

Understanding the options. Mel’s senior community incorporates assisted living and a nursing home for residents who need short-term rehabilitation services or longer-term round-the-clock care.

But it was clear Mel wanted to go home after being in the hospital instead of going to that rehab. Medicare would pay for a few weeks of visits from nurses and physical and occupational therapists. Would that be enough to set him on the road to recovery? We had no idea.

If Mel couldn’t return to his previous level of functioning after returning home, he might need to transition to assisted living, where he could receive more medical oversight and assistance. How would this work? We didn’t know and asked the geriatric care manager to find out.

Getting paperwork in order. Years ago, Mel assigned power of attorney for his health care decisions and financial and legal affairs to my husband. So long as Mel can manage on his own, he makes his own decisions: The legal papers were a backup arrangement.

But Mel hadn’t prepared a document naming all three sons as his “personal representatives” under the Health Insurance Portability and Accountability Act of 1996. This waives privacy concerns and gives them access to his medical information. It went on our “to-do” list.

The brothers also didn’t have a complete list of Mel’s doctors, the medications he was on and why he was taking them. Another item for our list, especially important since Mel left the hospital with prescriptions for 14 medications, several of them new. While he’d always managed on his own before, in his post-hospital fog it was clear he was nervous about managing this complicated regimen.

Understanding the prognosis. Before Mel’s hospitalization, we knew his kidney function was worsening. But what lay ahead? Was dialysis even an option for a 92-year-old in this time of COVID-19?

Who was best prepared to help us understand Mel’s prognosis and the big picture?

I’ve written for years about geriatricians’ comprehensive approach to the health of older adults. It turns out, there’s a top-notch group of geriatricians affiliated with the hospital where Mel was being treated.

After several calls, I reached one who agreed to see Mel after he was released from the hospital. Now, we have another new team member who can help us understand Mel’s health trajectory and issues that might arise going forward.

Having the conversation. What has yet to happen is the conversation that my husband hasn’t wanted to have. “Dad, if your health takes a turn for the worse again, what do you want? What’s most important to you? What does quality of life mean to you? And what can we do to help?”

With Mel’s hearing problems, doing this over the phone won’t do.

My husband would have to fly cross-country and, ideally, meet his New York brother at Mel’s place for a conversation of this kind. Before that happens, the brothers should talk among themselves. What’s their understanding of what Mel wants? Are they on the same page?

Also, no one has discussed financial arrangements.

Each time we explain to Mel one of the new services we’ve arranged, his first question is “What’s the cost?” His impulse is to guard his cherished savings and not to spend. My husband tells him he shouldn’t worry, but this, too, is a conversation that has to happen.

Being prepared. Professionally, I know a lot about the kinds of problems families encounter when an older relative becomes ill. Personally, I’ve learned that families don’t really understand what’s involved until they go through it on their own.

Now, Mel has a new set of supports in place that should help him weather the period ahead. And my husband is keenly aware that planning doesn’t stop here. He’ll be attending to his father far more carefully going forward.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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Isolation, Disruption and Confusion: Coping With Dementia During a Pandemic

GARDENA, Calif. — Daisy Conant, 91, thrives off routine.

One of her favorites is reading the newspaper with her morning coffee. But, lately, the news surrounding the coronavirus pandemic has been more agitating than pleasurable. “We’re dropping like flies,” she said one recent morning, throwing her hands up.

“She gets fearful,” explained her grandson Erik Hayhurst, 27. “I sort of have to pull her back and walk her through the facts.”

Conant hasn’t been diagnosed with dementia, but her family has a history of Alzheimer’s. She had been living independently in her home of 60 years, but Hayhurst decided to move in with her in 2018 after she showed clear signs of memory loss and fell repeatedly.

For a while, Conant remained active, meeting up with friends and neighbors to walk around her neighborhood, attend church and visit the corner market. Hayhurst, a project management consultant, juggled caregiving with his job.

Then COVID-19 came, wrecking Conant’s routine and isolating her from friends and loved ones. Hayhurst has had to remake his life, too. He suddenly became his grandmother’s only caregiver — other family members can visit only from the lawn.

After their walk, Daisy Conant and her grandson rest in front of their home in Gardena, California. (Heidi de Marco/KHN)

The coronavirus has upended the lives of dementia patients and their caregivers. Adult day care programs, memory cafes and support groups have shut down or moved online, providing less help for caregivers and less social and mental stimulation for patients. Fear of spreading the virus limits in-person visits from friends and family.

These changes have disrupted long-standing routines that millions of people with dementia rely on to help maintain health and happiness, making life harder on them and their caregivers.

“The pandemic has been devastating to older adults and their families when they are unable to see each other and provide practical and emotional support,” said Lynn Friss Feinberg, a senior strategic policy adviser at AARP Public Policy Institute.

Nearly 6 million Americans age 65 and older have Alzheimer’s disease, the most common type of dementia. An estimated 70% of them live in the community, primarily in traditional home settings, according to the Alzheimer’s Association 2020 Facts and Figures journal.

People with dementia, particularly those in the advanced stages of the disease, live in the moment, said Sandy Markwood, CEO of the National Association of Area Agencies on Aging. They may not understand why family members aren’t visiting or, when they do, don’t come into the house, she added.

“Visitation under the current restrictions, such as a drive-by or window visit, can actually result in more confusion,” Markwood said.

Daisy Conant and grandson Erik Hayhurst chat with a family friend on a Zoom call. Hayhurst is using Zoom to keep his grandmother connected to family and friends. (Heidi de Marco/KHN)

The burden of helping patients cope with these changes often falls on the more than 16 million people who provide unpaid care for people with Alzheimer’s or other dementias in the United States.

The Alzheimer’s Association’s 24-hour Helpline has seen a shift in the type of assistance requested during the pandemic. Callers need more emotional support, their situations are more complex, and there’s a greater “heaviness” to the calls, said Susan Howland, programs director for the Alzheimer’s Association California Southland Chapter.

“So many [callers] are seeking advice on how to address gaps in care,” said Beth Kallmyer, the association’s vice president of care and support. “Others are simply feeling overwhelmed and just need someone to reassure them.”

Because many activities that bolstered dementia patients and their caregivers have been canceled due to physical-distancing requirements, dementia and caregiver support organizations are expanding or trying other strategies, such as virtual wellness activities, check-in calls from nurses and online caregiver support groups. EngAGED, an online resource center for older adults, maintains a directory of innovative programs developed since the onset of the COVID-19 pandemic.

They include pen pal services and letter-writing campaigns, robotic pets and weekly online choir rehearsals.

Gina Moran helps her mother, who was diagnosed with Alzheimer’s in 2007, put on her mask. Gina Moran sometimes has trouble getting her mother to wear the mask. (Heidi de Marco/KHN)

Alba Moran must be reminded about the coronavirus pandemic when she is asked to wear her mask. (Heidi de Marco/KHN)

Hayhurst has experienced some rocky moments during the pandemic.

For instance, he said, it was hard for Conant to understand why she needed to wear a mask. Eventually, he made it part of the routine when they leave the house on daily walks, and Conant has even learned to put on her mask without prompting.

“At first it was a challenge,” Hayhurst said. “She knows it’s part of the ritual now.”

People with dementia can become agitated when being taught new things, said Dr. Lon Schneider, director of the Alzheimer’s Disease Research Center at the University of Southern California. To reduce distress, he said, caregivers should enforce mask-wearing only when necessary.

That was a lesson Gina Moran of Fountain Valley, California, learned early on. Moran, 43, cares for her 85-year-old mother, Alba Moran, who was diagnosed with Alzheimer’s in 2007.

“I try to use the same words every time,” Moran said. “I tell her there’s a virus going around that’s killing a lot of people, especially the elderly. And she’ll respond, ‘Oh, I’m at that age.’”

If Moran forgets to explain the need for a mask or social distancing, her mother gets combative. She raises her voice and refuses to listen to Moran, much like a child throwing a tantrum, Moran said. “I can’t go into more information than that because she won’t understand,” she said. “I try to keep it simple.”

The pandemic is also exacerbating feelings of isolation and loneliness, and not just for people with dementia, said Dr. Jin Hui Joo, associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine. “Caregivers are lonely, too.”

When stay-at-home orders first came down in March, Hayhurst’s grandmother repeatedly said she felt lonesome, he recalled. “The lack of interaction has made her feel far more isolated,” he said.

To keep her connected with family and friends, he regularly sets up Zoom calls.

But Conant struggles with the concept of seeing familiar faces through the computer screen. During a Zoom call on her birthday last month, Conant tried to cut pieces of cake for her guests.

Moran also feels isolated, in part because she’s getting less help from family. In addition to caring for her mom, Moran studies sociology online and is in the process of adopting 1-year-old Viviana.

Right now, to minimize her mother’s exposure to the virus, Moran’s sister is the only person who visits a couple of times a week.

“She stays with my mom and baby so I can get some sleep,” Moran said.

Before COVID, she used to get out more on her own. Losing that bit of free time makes her feel lonely and sad, she admitted.

“I would get my nails done, run errands by myself and go out on lunch dates with friends,” Moran said. “But not anymore.”

Gina Moran juggles several roles. She is the full-time caregiver to both her mother and baby, and studies sociology online. (Heidi de Marco/KHN)


This KHN story first published on California Healthline, a service of the California Health Care Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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This story can be republished for free (details).