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Pandemic forces family members into new role: Caregivers for elderly loved ones

Jess Silfa, left, with her grandmother Tomasa Soto, and mother Maggie Soto. With the coronavirus epidemic, younger family members such as Silfa are becoming caregivers for elderly relatives.
Jess Silfa, left, with her grandmother Tomasa Soto, and mother Maggie Soto. With the coronavirus epidemic, younger family members such as Silfa are becoming caregivers for elderly relatives. (Courtesy of Jess Silfa)
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Until recently, Jess Silfa’s 96-year-old grandmother was living in a rehabilitation center in Tampa, recovering from hip surgery. When the coronavirus started spreading in Florida and around the United States, Silfa made the difficult decision to pull her grandmother out of the center, months before the doctor thought she was ready to be discharged.

 “I had to make a quick decision,” said Silfa, who is disabled and uses a cane. “I was afraid the virus would run rampant like it did in other homes in Washington and Illinois.”

Her concern is warranted. Coronavirus cases in elder-care facilities are surging. As of Friday, at least 55 coronavirus deaths in the United States, one-quarter of total fatalities, had occurred in elder-care facilities, and the actual number is likely higher. At least 73 facilities in 22 states have reported coronavirus infections.   

 Roughly 40 million Americans were providing unpaid elder care before the coronavirus pandemic. The number could be higher now. Younger relatives such as Silfa are moving older relatives out of assisted living facilities and rehab centers, while others are discontinuing home health services and losing access to respite provided by day-care centers, which have closed.

 They are taking on difficult and unaccustomed roles. Silfa, who is in her early 30s, helps her grandmother use a bedside commode, cuts up her food and gives her sponge baths.

 Obtaining help is cost prohibitive, on top of concerns about exposure. Silfa works as an online tutor and helps college students write and edit essays. She earned about $1,000 a month, but since the outbreak she has not been getting much work. The aides she has found cost $24 dollars per hour, she said.

 For support, Silfa relies heavily on a Facebook group for Millenial caregivers, where she can post her concerns freely. She also shared her experiences on her personal Facebook page, where worried friends have reached out. Recently, a friend in New York mailed her disinfectant wipes. Another friend mailed her bottled water from Atlanta, though Silfa is not suffering from a water shortage. “I think he just wanted to help in some way.”

Parents, you are the filter through which your kids see this crisis. How you talk about it matters.

Caregivers such as Silfa need to be well-equipped to provide care to their loved ones, said Sandy Markwood, CEO of the National Association of Area Agencies on Aging, which represents a network of more than 600 state-designated agencies that provide services to the elderly. “They have specific needs and will have those needs 24/7,” she said.  

 Caregivers should be aware of their elderly family member’s medical and mobility needs, and be aware of how to handle cognitive impairments, she said. People with cognitive dysfunction due to Alzheimer’s disease or other dementia especially struggle during times of change.

 “It tends to amplify and escalate cognitive issues,” Markwood said. “If you’re thinking, ‘Mom seemed fine yesterday at the center and when I got her home today it was a different story.’ ” And people with dementia may need extra or constant reminders to follow guidelines for hand-washing and social distancing. 

If caregivers are taking relatives into their home, the home should be accessible and safe, with ramps and guardrails installed where needed. “Normally area agencies can do an in-home assessment to determine those needs and help make those additions,” Markwood said. “But that whole system is pretty stressed right now.”

Agencies are modifying services, and finding ways to still offer meals, support and help with transportation while following local, state and Centers for Disease Control guidelines for preventing the spread of the coronavirus.

There is also more money on its way to help elderly Americans. The Families First Coronavirus Response Act, passed by Congress this week, allocates $250 million for Older American Act nutrition programs, and local agencies will receive those funds to provide meals to elderly people.

Markwood added that caregivers need to establish a network of backup caregivers, so that it can be tapped into when needed, like if a caregiver falls ill, with covid-19 or something else. “Ask people to start reaching out through phone calls, video chats or by sending cards,” she said.

Caregivers should take regular inventory of pantry items and medications, said Bill Walsh, vice president of AARP and the organization’s coronavirus lead. Grocery stores and pharmacies may be out of items as Americans stock up during the pandemic. “These are people who might have multiple chronic illnesses,” he said. “Keep a list of the chronic medication your loved one needs and keep a 30-day supply.”

Self-care, both physical and emotional, is also important, Walsh said. “People who are looking out for other people sometimes forget to take care of themselves,” he said. “If you’re down, you can’t care for your loved one.”

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For Betty Smocovitis, a professor of history and biology at the University of Florida in Gainesville, that is a concern. She is caring for her 85-year-old mother in Canada, where Smocovitis, 64, does not have health insurance. She plans to travel to Detroit if she needs care.

Smocovitis, who teaches a course on the history and evolution of infectious disease, had been anticipating that the coronavirus could become a global pandemic. When she flew to Windsor on Feb. 27, during spring break and before the university moved classes online, she knew that she might not return to Florida anytime soon because her mother, who has two types of cancer that require regular chemotherapy and immunotherapy, would need her.

“I brought the dog, I brought his medicines, I shut down the house,” she said. “I should have shut down more, brought more work and a bigger suitcase, but at least I did what I did.”

She has discontinued the help her mother had for cleaning, as well as her mother’s home-care nurse. “I said thank you very much, but I need to limit contact,” Smocovitis said. “The nurse visits multiple places, and those visits include some in retirement communities.”

 In addition to the challenges of working, caregiving and cleaning, Smocovitis is experiencing the friction that naturally rises between family members, regardless of age. Smocovitis’s mother was frustrated that Smocovitis wouldn’t let her meet friends in person for coffee and card games or go to church. But it’s been difficult for Smocovitis, too. “I’m in the same room I had when I was 14 years of age,” she said.

Home-care providers are facing their own challenges. Elissa Cast, a home-care registered nurse who works for an agency called Visiting Nurse Services in Southern Connecticut, said her agency has seen a 40 percent drop in clientele since the outbreak, even though the agency is following CDC guidelines and using the recommended personal protective care equipment when interacting with patients.

 She understands the concern that some families have. “Home care is such a unique environment. We sit on their beds, at their table,” she said. “Now they have to decide, ‘Do I want these people in my home?’ ”

Cast’s work in a patient’s home typically lasts about a month. She offers care following a major event or surgery, monitoring vitals, and doing weight, skin and edema checks. She makes sure that physical therapy is progressing well, and that medications are being taken and side effects are not too severe.  “We can’t get that done now, and there’s a chance that if they just sit at home, they are going to be admitted in the hospital again,” she said.

  Until last week, Kristine Eno’s father, Richard Eno, 90, was receiving care from Cast in his home after suffering from gastrointestinal bleeding and a heart attack. Kristine Eno decided to terminate his care and let go of his physical therapist, leaving him at home alone.

 It was a difficult decision. Kristine Eno is a nurse and works in an intensive care unit, where she is more likely than others to be exposed to the coronavirus. She’s been on vacation from her job so, in anticipation of her return to work, she has cooked and frozen weeks’ worth of meals for her father, whose condo is only a short drive from her home.

But she is filled with anxiety about whether her father understands the severity of the situation and whether he will follow the protocols she has set in place. She worries that without his physical therapist he will lose strength in his legs or that he will forget to take his medications. She has hidden his car keys so that he does not try to drive.

Most troubling, though, is that when she goes back to work, she will no longer feel comfortable having physical contact with her father. She will continue to visit, because he lives on the ground floor of a condo building, and she can drop off groceries and wave to him from outside, she said.

“I know he’s 90 and, as a nurse, I know this is his end of life, the waning years,” she said. “It’s so hard not to touch him or hug him.”

Sindya Bhanoo is a health and science reporter living in Austin.

Resources for Caregivers

The U.S. Health and Human Services Deparment’s Administration on Aging runs a service called Eldercare Locator, which connects older Americans and their caregivers with local support resources such as meals, home care and transportation, as well as caregiver needs training. It can be reached online or at its toll-free number (1-800-677-1116).

The Eldercare Location can help you find and contact your local Area Agency on Aging (AAA). AAAs were established under the 1973 Older Americans Act as organizations to help vulnerable older Americans. Many AAAs provide meals, transportation and in-home services. Services may currently be limited due to the coronavirus outbreak, but contact your local agency to find out.

 Check the CDC website for updates on guidelines regarding the coronavirus. The website provides details for families and households about how to stay safe and be prepared in the event that a family member falls ill from COVID-19. Specific information is available for high-risk individuals, including older adults.  

  Build a support network. It is always important for the primary caregiver to have a network of support caregivers but it is particularly important during a global pandemic. “Make a plan in case you get sick,” said Bill Walsh, of the AARP. “Identify your caregiving team – friends, neighbors and other family.”

 Look for online support groups and hotlines. These networks can offer valuable advice as well as emotional support. AARP runs a caregiver support line at 1-877-333-5885 as well as a Facebook group for caregivers. They are also holding weekly webcasts about COVID-19 and what it means for older adults and family caregivers.

  Cognitive impairments dementia does not increase risk of COVID-19, but dementia-related behaviors may increase risk. The Alzheimer’s Association lists tips specific to dementia caregivers during the outbreak.