By Marisa Gerber Los Angeles Times
WWR Article Summary (tl;dr) As Marisa Gerber reports, "During the 90-minute meetings, the women grieve for their old lives — about the days before they had to remind their mother of their name or stare into their sister's eyes and see only blankness. They talk about how hard it is to make big money decisions without input from a partner."
Her hands pulsed with pain as she tried, once more, to tug a pair of super-tight socks over her husband's toes and up his swollen legs. The compression socks would help his circulation, she reminded herself. They would help keep him out of the hospital.
Helen Wynne — the fulltime caregiver for her husband — took a deep breath and yanked. But a twinge crawled up her fingers and reverberated in her joints, a feeling she knew well after years of living with lupus and arthritis.
She sat on the floor of her South L.A. home crying and looking up at her frail, then-89-year-old husband, Harel, a Korean War veteran, who leaned down to help but couldn't reach his feet.
"I can't do it!" Wynne remembers crying out.
It was around that time last fall — during the days of back-to-back ER visits, when she started to feel lightheaded from stress — that the 67-year-old Wynne decided to follow up about the pamphlet she'd picked up during a recent church event. On a Tuesday morning a year ago, she arrived at the support group for caregivers that, before the pandemic, met twice a month at the First African Methodist Episcopal Church.
I'm Helen, she told the group, and I'm a caregiver for my husband, who has Alzheimer's. When I have to remind him to eat or nap, she told the women around the wooden table, I feel like I'm caring for a child again. The group's leader, Bobbe Akalonu, offered an encouraging nod. "Welcome to the caregiver world," she said.
The dynamic Akalonu, 86, who wears a signature black hat and reminds you, with a smile, that she's "vintage, not old," leads the support group that now meets via conference call.
Akalonu started the group in 2014 as a collaboration between First AME, the city's oldest African American church, and USC's Family Caregiver Support Center, one of 11 state-funded caregiver resource centers, which she learned about years earlier while caring for her mother, who had vascular dementia.
She is passionate about inclusivity — any caregiver is welcome, Akalonu often says — but the core group of current attendees are all women, many of whom have some tie to the church in the West Adams district. Akalonu has attended the church since she was a baby.
The group members are predominantly baby boomers caring for husbands or parents with dementia or Parkinson's, but there is also a millennial in the group and members of the Silent Generation (born from 1928-1945), as well as a "sandwiched caregiver," who helps her mother who has Alzheimer's and her son who has Down syndrome.
During Wynne's first meeting, her cadence quickened as she introduced herself and began rattling off her husband's many health conditions. She paused, scanning the room until she locked eyes with Akalonu. "I'm listening," Akalonu assured her. "I hear you."
The stress had been crushing lately, Wynne said, and she realized she'd neglected herself and her own health.
"Self love first," Akalonu said.
During the 90-minute meetings, the women grieve for their old lives — about the days before they had to remind their mother of their name or stare into their sister's eyes and see only blankness. They talk about how hard it is to make big money decisions without input from a partner.
While sharing stories about how, after a seventh call, you sometimes have a breakthrough with the insurance company, they toss out terms like Coumadin and laminectomy, knowing that everyone here understands the reference to a blood thinner and back surgery.
Inside this room, the isolation they often feel finally disappears. :: The U.S. is several years into a caregiving crisis that's expected to get worse as the baby boomers age.
With divorce, couples having fewer children and people retiring later in life, the pool of caregivers within families is dwindling quickly. By 2030, AARP estimates, the ratio of Americans in their 80s or older to potential family caregivers will be 1 to 4, down from 1 to 7 a decade ago.
And that will be especially problematic in California, which is graying rapidly and faces a projected shortage of more than half a million professional home-care workers in the next decade — a problem born of the mismatch between low wages and the tiring work.
The growing shortfall of professional caregivers will put more pressure on the state's 4.5 million family caregivers, including the women in the Tuesday support group.
And because older Black people are about twice as likely as older white people to have Alzheimer's or other dementias, the growing gaps will continue to disproportionately affect Black families.
When a member of the Tuesday group mentioned her recent vacation and the steep price tag of her husband's week-and-a-half-long stay at a respite care facility — $5,000 — it drew knowing nods from around the table. At another meeting, a longtime caregiver said she scrutinizes even the slightest changes in her husband's condition, desperate to catch any issues before they require an ambulance ride.
"That's $1,500," another member added.
The average family caregiver in California spends $7,000 out-of-pocket annually toward their loved one's care. The financial strain is disproportionately high for Black caregivers — who on average spend more of their annual income on caring for a loved one than white caregivers — and who are more likely to care for a loved one without help from service providers, said Dr. Donna Benton, a geropsychologist who runs the Family Caregiver Support Center at USC.
And that is why the support group at First AME — a civic powerhouse and spiritual hub for many Black Angelenos — is so important. It provides a critical bridge, Benton said, for linking Black caregivers to the services offered by the USC center, including individual consultations, training and access to support groups and grant money for respite.
"They serve as that trusted middleman," Benton said of the church, explaining that while some caregivers might feel hesitant coming to the university for help, they often feel more comfortable knowing it's a partnership with First AME.
The collaboration has been so successful that other caregiver centers across the state are now partnering with AME churches in those areas. The COVID pandemic has not only shone a bright light on disparities within the healthcare structure in the U.S. It has also helped highlight other areas of inequality, including the dire impacts of not having proper technology or WiFi, as more doctor's appointments and support groups have moved online. The center recently has helped some caregivers get new tablets, Benton said, but there is still a vast need.
While a 2018 report from California's family caregiver task force concluded that the state's current policies haven't "kept pace with changing needs," the topic of family caregiving has gained serious traction in recent years.
Edna Kane Williams, senior vice president for multicultural leadership at AARP, who was a live-in caregiver for her mother for six years, described the role as "an all-consuming, exhausting, emotional roller coaster." While caring for her mother, her social circle shrunk drastically and quickly — she often felt isolated, trapped and hesitant to ask for help.
"I never did a support group and I'm really sorry that I didn't," she said. "I think there's strength in sharing your story."