‘How am I going to keep this up?’ COVID intensifies plight of family caregivers
The pandemic has made a stressful task only harder for the 4.7 million Californias who care for a relative or close friend over the age of 50.
It’s impossible not to notice the shimmery, silver circles at Ann Lucero’s temples. The Amino Neuro frequency discs, about the size of 50-cent pieces, pulse a gentle energy intended to reduce pain.
“Some people think it’s hocus pocus,” Lucero says with a laugh. But she swears they work, and she needs an antidote to all the stress-induced joint aches, muscle knots and nervous sweats she’s developed over the last several months. Lucero relies on support groups too. She’s joined three since March.
Lucero, 44, is among the 4.7 million people in California caring for a relative or close friend over the age of 50. When the coronavirus hit, she and her 87-year-old mom, Fern Lucero, committed to life within the walls of their home in Redwood City, leaving Lucero as the sole care provider to Fern who struggles with diabetes, frequent confusion and, due to several small strokes, has lost nearly all of her ability to speak.
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She’s down to mostly one word, a soft, “no,” even when she means yes. Gone were Fern’s exercise classes at the YMCA and other activities Lucero depended on for a break.
Vaccines now provide a path out of isolation. Ann and Fern, both of whom have never been big on flu vaccines, are nevertheless eager to receive one of the approved coronavirus vaccines. Federal and state officials have rushed vaccines to nursing homes and assisted living facilities — and in theory any Californian age 65 and over is eligible for a shot. But a vaccine shortage and chaotic distribution have made the reality murkier.
It’s less clear where family caregivers fall on the state’s priority list.
“There’s lots of talk in caregiver groups about when it will come to us. But without my mom in a facility there’s a lingering question of when,” Lucero says. And even though she performs much of the same duties as a nurse, she’s not considered a frontline worker. “I’m not holding my breath for (the vaccine) anytime soon.”
The plight of family caregivers often goes unseen and unheard. Decisions around caring for an aging relative unfold in personal spaces — living rooms, hospital bedsides, anguished phone calls. Surveys have shown caregiving is most often provided by family, primarily women, without compensation.
Yet Dr. Jennifer Olsen, executive director of the Rosalynn Carter Institute of Caregiving, calls these caregivers the “backbone” of the U.S. healthcare system, providing as much as 90% of home health care for no pay. The pandemic has intensified the hardships shouldered by family caregivers. Last summer, Olsen’s institute surveyed 400 caregivers nationwide and found that 83% reported increased stress from the constant effort to keep their loved ones from being infected and the burnout from months of caregiving in quarantine.
“This is our emergency room moment,” Olsen says. “And if we do not begin to seriously address the needs of caregivers and provide necessary support, this indispensable, largely invisible component of our healthcare system is in danger of collapse.”
Amid COVID, family caregivers fear outside help
Family caregivers generally fall into two categories: those who volunteer for the job and those who have no other option because the cost of nursing homes or home health aides is too high. Lucero, the youngest of Fern’s three children, can afford help. But for months she resisted hiring anyone, in part because of the pandemic.
Pandemic or not, caregiving is hard. Each morning Lucero sets out Fern’s pills on a saucer next to an almond milk protein shake. She helps her mom shower and dress, then it’s on to cleaning, scheduling medical appointments, cooking, and, lately, searching the internet for gentle exercise videos and online speech therapy.
“I get this sinking stomach feeling of how am I going to keep this up?” Lucero says.
Terri Harvath, founding director of the Family Caregiving Institute at the Betty Irene Moore School of Nursing at UC Davis, says now is the time to build support structures for family caregivers. (In California alone, the over-65 population is expected to swell to 8.5 million by 2030, up from the current 6 million.) Just as doctors ask about smoking and eating habits, Harvath says they should ask whether a person is caring for an elderly relative or friend and then assess how it’s impacting their health. She’d also like to see more formal training made available. “I went to nursing school to deal with pressure ulcers and injections,” Harvath says.
Lucero learned caregiving on the fly. She’s installed handrails in the hallway and bathroom. She knows when her mom hovers while she cooks, she’s hungry; hiccups at a meal, Fern’s eating too fast. Their days follow a slow, loving routine. They watch “Monk” during lunch and rotate through Zoom classes that Lucero keeps organized on a color-coded Google calendar — Fern’s activities in yellow and red, Lucero’s in blue and purple.
The two have always been close. They moved in together as roommates more than ten years ago, her mother politely retreating to her room if Lucero had a date over to the house. At the time, Lucero was working in the Redwood City School District and Fern, a medical microbiologist, was still teaching at the college of San Mateo. She only retired four years ago when her health started declining.
This past summer, Fern slipped in the bathroom and hit her head so hard the wound required staples. She now wears a tomato-red helmet as she carefully shuffles through the house. Lucero wishes she’d receive more guidance from her mom’s doctors. “Things that would be helpful would be, like, here’s a progression of caretaking — watch for urinary tract infections, falls, here’s a bathmat that prevents slipping.”
“If we do not begin to seriously address the needs of caregivers and provide necessary support, this indispensable, largely invisible component of our healthcare system is in danger of collapse.”
— Jennifer Olsen, executive director of the Rosalynn Carter Institute of Caregiving
Family caregivers must navigate a patchwork of private, nonprofit and government resources to find caretaking classes, home care services and other assistance. Mary Griffin, vice president of homecare and support services with the Institute on Aging in San Francisco, says often that search begins at the last minute, with a sick or hurt relative and family members in distress.
“You don’t know what you don’t know until you run into this situation,” she says. “The people who reach out to us are just trying to gather what is available. They might think Medicare is going to help them with providing care to their loved one.” She has to break the news that Medicare does not cover home health aides or personal care assistants.
The high cost of outside care is likely one reason more than half of caregivers say they had no choice but to care for a relative, an AARP survey found. Paying out of pocket can cost more than $40,000 per year for 30 hours of care a week. Low-income seniors can qualify for In Home Supportive Services, a Medi-Cal funded program that covers household help and some medical care. It assists about 600,000 seniors or people with disabilities.
Griffin says the millions of other caregivers — those who make too much to qualify for In Home Supportive Services, but too little to pay out of pocket — are hit the hardest when families suddenly must arrange caregiving plans.
“She won’t keep her mask on”
One of Lucero’s family friends, Tracey Fleming, is in this group. She lives with her 86-year-old mom, Alicia Fleming, who has Alzheimer’s. Fleming wants to hire help but cannot afford it and doesn’t qualify for the Medi-Cal support program. “It’s been harder since the pandemic,” she says. “She loves to go in the car, and we can do that. But we can’t go to Target or the grocery because she won’t keep her mask on.”
Like the Luceros, Fleming and her mom largely stay put in their home outside Petaluma. Pre-pandemic, Fleming says a neighbor would often keep an eye on her mom while she headed to work at Sonoma State University. She also paid a companion about $100 for five hours of care per week, a cost she could manage. With COVID, that outside help ended.
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AARP California and other organizations are pushing for the state to implement programs that will keep seniors in their homes without costing them or their families a fortune. The state of Washington, for instance, recently created a social insurance program funded through a payroll tax that can reimburse costs of long-term care. Governor Newson’s recently released Master Plan for Aging does not include a policy related to funding long-term, in-home care, but rather seeks to partner with the incoming Biden administration to create a universal long-term care benefit. The plan also calls for better educating family caregivers on paid family leave and respite opportunities, as well as offering more training on how to care for seniors in the home.
Lucero, who is on unpaid leave from her job with Redwood City Schools, says some nights she gets so lonely she’ll “shotgun text” 15 friends at once, an attempt at conversation. Since the pandemic, support groups are her main social outlet. She’s noticed other caregivers venting about the heightened pressures over these last months, some of it in the form of dark humor. “I’m hearing things like, ‘I’m caring for a parent, how the hell do I date during a pandemic?’ ” she says. “Or ‘Thank goodness he has Alzheimer’s and thank God he doesn’t remember how mean I was to him.’ ”
Lucero can relate. She’s caught herself snapping at her mom more than in the past, particularly when they tangle over bathing and other tasks Fern wants to do on her own. “There’s been times I’ve lost it and had to apologize and cry about it later,” she says. “I’m struggling with feelings of guilt for not being able to take care of my mom as she took care of me.”
Finally, in late October, Lucero hit a limit and decided she needed to hire a home health aide. Several home health agencies contacted for this story say that while their clientele dipped at the beginning of the pandemic, worn out family caregivers have started reaching out. Support groups are also seeing more people. At the Family Caregiver Alliance, a stress management class that usually has 25 students had 100 sign up.
By late December, Lucero was on caregiver number six. The first few didn’t work out. One didn’t latch Fern’s helmet correctly. Another left her in filthy clothing. Even with COVID cases surging in the state, Lucero is continuing her search for help. Those few hours each day without caretaking duty is the worth the risk.
A fellow caregiver’s confession helped guide her to that realization. “It wasn’t until someone in one of my support groups said out loud, ‘I’m getting a caregiver for my wife because I don’t want to do it,’ that I felt permission to get a caretaker,” she says.“When COVID hit, I felt like, well, we’re just hanging out. How hard could it be?”
Anne Marshall-Chalmers is a student in the Investigative Reporting Program at UC Berkeley’s Graduate School of Journalism. This article was written with support from the Scan Foundation