And while support groups are an important piece of the puzzle, Kane Williams said, they're still rare in many parts of the country and they can't solve all the stressors caregivers face, including the long-term financial impacts, especially for people — often women — who put their careers on hold.
"There definitely is a price people pay," Kane Williams said, adding that the impacts are even more pronounced for Black and Latina women, who already get paid less than anyone else for equal work. "When is enough, enough?" :: It was 6:15 a.m. on a Thursday in February and Wynne had already been up for half an hour.
She scurried through the kitchen, twisted on the gas stove and threw a frozen turkey patty and eggs on the skillet. After setting the table, she put her husband's blue pillbox to the right of his plate — eight tablets, including Donepezil, a memory medication that she says helps him remember to do things like turn off the faucet.
"Breakfast is ready!" she shouted from the kitchen. Harel walked slowly into the dining room, stopping a few feet shy of the table.
"You're right here, baby," she said, tapping twice on his chair. He took a few more steps, then paused, whispering the word "jacket." She helped him pull on his green fleece and then guided him to the table.
Before the pandemic, her husband spent a few hours each week at the Mayfair Adult Day Healthcare Center. Now he stays home and Wynne is helped by a caregiver whose costs are covered because Harel is a veteran. Having someone come three times a week to help cook and clean was especially critical, Wynne said, after she had foot surgery and had to stay off her feet. During those two weeks, she had a second caregiver, who she found through the USC center, come to help her.
"An answer from God," she said.
While she hasn't yet called into the Tuesday group since it's gone virtual, she hopes to return soon, knowing it's a space where members often chime in with advice or a gentle correction for one another.
A therapist whose husband has Parkinson's worries about him falling when he gets up to use the restroom at night. ("Would a bedside commode help?") Another woman complained of insomnia. ("Try the Hallmark channel. 'Golden Girls' at 2 a.m. works like a charm.")
A new member said she wanted to take a trip to Atlanta, but wondered if anyone had put their loved one in a respite-care facility for more than a week. ("Yes, for a trip I took to Malta.") Did you feel any guilt? ("I've learned not to.") Another member vented that her mother has turned into quite the "mean girl." ("It's the disease, not the person.")
When Akalonu, the group's leader, was growing up, her paternal grandmother got sick and moved into a small bungalow behind her family's home near USC.
"We always took care of our elders," she said, explaining that following the deaths of her husband and father in the early 1980s, her mother had a vascular stroke and Akalonu moved into her home so she wouldn't be alone. For years, her mother maintained a lot of independence, but when her dementia worsened, Akalonu turned to the Family Caregiver Support Center for help.
Her mother died in 2002, but her passion for caregiving remained and she wrote a proposal for the support group and presented it to Pastor J. Edgar Boyd, who loved the idea of collaborating with USC, knowing it holds sway in statewide conversations about caregiving, aging and research surrounding Alzheimer's. Boyd was also particularly impressed with the USC center's focus on respite.
"Caregiving is a godsend, and having somebody relieve the caregiver is even more of a godsend," Boyd said.
During an in-person meeting before the pandemic, Akalonu asked Melissa Phillips — "our millennial," Akalonu lovingly calls her — how she was doing. Phillips, now 38, said she was deeply frustrated with herself. She had forgotten to remind her 89-year-old grandmother, whom she lives with, not to take her blood thinner before a dental appointment, so her grandmother couldn't have a tooth pulled as planned.
"Are you taking blame for those things," Akalonu asked, "when you should be forgiving yourself?"
Phillips smiled softly.
Phillips adores Akalonu — "Miss Bobbe,"she calls her — for her warm, sure presence. As a small thank-you to her and the other group members, she bought them folding fans from the Dollar Tree. They gasped and hugged her, as if she'd given them Tiffany diamonds.
"To be around that type of gratitude," Phillips said. "It does something to you."
The pandemic has made keeping a routine — a sacrosanct part of caregiving — especially tough.
Before the shutdowns, Phillips' grandmother maintained a robust social life. She went to several church events and salsa and line dancing classes every week. Then, in an instant, it was gone.
Phillips encourages her grandmother to take Zoom dance classes, but it isn't the same. She still has her cheerful spirit, Phillips said, but now walks more slowly, seems deeply tired and often repeats the same question 50 times in a day.
"I saw it rapidly affect my granny," Phillips said.
These days, during their Tuesday meetings, the women share about the latest visiting restrictions at hospitals or nursing homes. They swap information about rent-relief grants and free food delivery services for seniors and encourage one another to practice self-care with at-home Zumba or a drive to the ocean.
In her 86 years, Akalonu told the group, she could not recall anything like this moment in history. The pandemic has created deep stress, she said, but has also served as a reminder of how interconnected we all are.
"It's gotten us out of ourselves and into other people."
At the end of the meeting, women signed off, creating a melody of "Buh bye," "Have a peaceful evening, "and "Be blessed," layered over a steady electric beep of ending calls. "Until we meet again," one last voice said before the line went quiet.
They knew that in two weeks, they would all dial in again to share new setbacks and joys — another chance to laugh together through tears. ___ Distributed by Tribune Content Agency, LLC