Family caregivers in Miami face new challenge: protecting elderly loved ones from COVID-19
Schyler Watson said her mother, Barbara Wilson, who is 73 and living with Alzheimer’s, has been declining since the outbreak of the coronavirus pandemic turned the two women’s lives upside down.
“All I can do is shed my tears, come back to reality and say, ‘Ok, let me toughen up,” said Watson, who is taking care of both her mother and her four-year-old son, Grayson, in the family’s Miami Gardens apartment.
Since both her son’s pre-K and her mother’s adult day care center shuttered in March, Watson has been juggling expanded caregiving responsibilities with the demands of full-time remote employment. Watson’s job is to take calls and schedule patient appointments for the University of Miami Health System.
“Prior to this pandemic, I kind of was able to have that leisure time at work,” said Watson. “Even though I was working, I still felt like I was free in a way.”
No longer.
What makes Watson’s caregiving so intensive is the fact that her mother, who has been living with Alzheimer’s for more than eight years, needs help with everything from feeding to bathing and clothing.
“She’s like a baby. She needs total assistance. And it’s on me to provide that total assistance,” said Watson.
Further straining the family’s home life is the knowledge that Wilson, as an adult over 65 with significant preexisting conditions, is among those most vulnerable to COVID-19.
“I’m barely going out anymore, unless it’s really necessary. I work for the University of Miami and I’m scheduling patients who do have COVID-19 and I hear their stories,” said Watson. “And it’s like, wow, I don’t want my mom to become a statistic. The threat is real.”
Keeping the household afloat means making several trips from the living room, where Watson set up her work station, to the bedrooms to check up on her son and her mother. It’s a routine that makes for long, stressful days.
“There’s so much to juggle and there’s just one of me,” said Watson. “It becomes very stressful. I have to really talk to myself and say, ‘Sky, make sure you take care of yourself, make sure you eat, make sure you use the bathroom when you’re supposed to.’ I hate to get graphic like that but it’s true, because you kind of forget yourself a little bit and you tend to everybody else.”
IN FLORIDA, MORE SENIORS LIVE WITH FAMILY THAN IN NURSING HOMES
Over the course of COVID-19’s spread throughout the country and state, elder-care residential facilities have emerged as especially deadly virus hot spots. In Florida, nursing homes and assisted living facilities (ALFs) have tallied more than 800 coronavirus-related casualties so far. That means elder-care homes now account for 42 percent of the state’s total death toll, a percentage that has been steadily creeping upward.
But advocates explain that, to have a comprehensive understanding of seniors’ unique vulnerabilities during this time, it’s important to consider not just the residents of nursing homes or ALFs — Florida has roughly 170,000 people living in such facilities — but also the vast majority of older adults who live at home.
In 2017, according to the AARP, there were more than two million older adults in the state who, like Wilson, are being taken care of by loved ones.
“Certainly the nursing home industry and residents living in elder-care facilities are top of mind for us, but we also have to focus on the much larger number of older adults who are at home,” said Dave Bruns, spokesman for AARP Florida.
Living at home, as opposed to in a crowded facility, automatically confers a higher degree of protection from the virus. But folks’ lesser visibility can make some of the problems they face go overlooked, Bruns said.
“The good part is that many of the people living at home are isolated, and they have very little contact with anyone other than a family member ... But on the other hand there are not very many institutions that are regularly checking on them,” he said.
In Florida, according to an AARP report based on 2017 state data, 2.9 million family caregivers provided an estimated 2.4 billion hours of unpaid care to older relatives. That’s a number that is expected to go up as families choose to forgo in-home assistance to minimize the risk of infection.
“We’re seeing a lot more families picking up more slack because they don’t want people, professional aides coming in from the outside that could be bringing the virus,” said Teri Busse Arvesu, who leads Miami-Dade County Mayor Carlos Gimenez’s Initiative on Aging.
EFFECTS OF ADULT DAY CARE CLOSURES RIPPLE THROUGH THE COMMUNITY
In normal times, many family caregivers across Miami-Dade got a break on weekdays thanks to adult day care centers, which took in and cared for seniors while members of their households worked.
But as worries around the coronavirus’ spread started escalating, many of the county’s more than 150 adult day cares closed. Wilson’s day-care center for older adults living with Alzheimer’s, Easterseals, shut its doors in mid-March, weeks before Gimenez ordered all adult day cares closed in early April.
Though industry professionals say keeping seniors at home was a public health imperative, some are concerned center closures could result in spottier care.
“When they come to the daycare center all their needs are met during the day, their personal care needs, they are eating, they are being engaged in activities, their medication is being administered. So all their needs are met at the center and then when they go home that means conversely that there are gaps. There are things that aren’t happening,” said Loreen Chant, president and CEO of Easterseals South Florida.
Also fueling worries about patients’ well-being — and family caregivers’ growing workload — is the fact that day care closures can prove to be particularly disruptive for folks living with Alzheimer’s who struggle during times of change.
“At Easterseals our clients all have Alzheimer’s and other types of dementia, and a change in routine can really alter their behavior. They become more confused,” said Angela Aracena, senior director of adult day services at Easterseals. “So the families that were only dealing with protecting the client from getting infected [with COVID-19] must also manage new behavioral issues.”
Watson has noticed that her mother is less alert while in confinement than she was before.
“You try to keep the same routine she had but when you are a caregiver and you got so many things to do, it’s difficult,” she said. “My mom is not traveling to the center, she’s not able to be around other people, she’s not able to interact with her peers or have activities going on around her. It does cause a decline, and it causes more confusion.”
To give patients a connection to their pre-pandemic routines, Easterseals is delivering to families the same meals patients used to eat at the center.
Easterseals is also supporting caregivers with daily check-in calls, as well as by giving families the option to receive daily visits at home from aides who used to work with patients when centers were open. These aides, who are outfitted in protective gear, help patients with both daily care necessities as well as with cognitive activities.
Though Watson was initially “terrified” to let a non-family member into the apartment, she eventually relented after being on her own for some time. Now, an aide visits her household every weekday from 1-5 p.m.
“I am so happy to see her,” said Watson with a laugh. “When she comes in she pretty much takes over what I’ve been doing for my mom for a little while, and I get to just do my job and tend to my son. It’s been a big help.”
Finding ways to adapt and keep providing assistance to families like Watson’s is important said Chant, from Easterseals, because it helps prevent the “ultimate worst case scenario” for program participants: a transfer to a nursing home or ALF.
“Now you can see more clearly than ever how avoiding that is more significant than we even understood,” she said.
‘TAKING CARE OF MY MOM IS MY NEW JOB’
Mily López lives in a house near Miami International Airport with her husband, her 81-year-old mother and her 95-year-old father-in-law. Because of her mother’s fragile health — she has diabetes, high blood pressure, and early-stage Alzheimer’s — Lopez had long been taking some of the precautions that have in recent times become nearly universal, from stocking up on sanitizer and alcohol wipes to regularly disinfecting the house.
But the arrival of COVID-19 has made Lopez’s caregiving more stressful than ever.
“Thank God I was doing the right thing all along. But now I’m afraid to leave the house. I only go to the grocery store once a week and I feel like I’m going to have a heart attack, I’m so afraid to be near people,” said Lopez. “I have never felt this kind of pressure before.”
Since Lopez withdrew her mother in early March from the day-care center she attended daily, her caregiving responsibilities have multiplied.
“Taking care of my mom is my new job now. Before I was taking her to the day care at Easterseals, making sure she had everything she needed when she got back. Now the day care happens to be my home,” said Lopez, who has put her career as a Realtor on hold. “And I’m having a hard time. I’m worn down by 3 o’clock.”
A bright spot in Lopez’s schedule is the support group conducted via conference call that Easterseals arranges every week for family caregivers like herself.
During the calls, caregivers share advice and, mostly, commiserations. Lopez’s main takeaway from the weekly chats is that families are struggling.
“Caregivers are mostly having a really hard time. They need to be thought of more,” she said. “We as caregivers are not getting any money for anything. There’s no one saying, ‘Hey, caregivers should be given certain things to make sure their loved ones are ok.’ No. There are no masks for us, no gloves, no sanitizer. We have to figure everything out ourselves.”
With no end in sight for the pandemic conditions that are making caregiving more draining than usual, families are relying on a strong sense of purpose to see them through.
“It gets to that point sometimes where you feel like giving up, but you know deep down that your loved one needs you,” said Watson. “I was very asthmatic as a child and my mom never gave up on me. That’s why I go so hard for her now.”
Links to online resources for caregivers as well as information about services related to COVID-19 for older adults can be found on the website of South Florida’s Alliance for Aging.
This story was originally published May 15, 2020 at 2:32 PM.
