Caregivers suffer higher burnout post-pandemic, few resources in the U.S. for long-term care
For Davette Robinson, it began with an innocent accusation.
"He said, I wasn't his wife, and I shouldn't touch anything that she had," Davette said. "It got to the point where if I go sit at my computer, he would come over. He said, 'Don't touch anything here.' So I couldn't use my computer while he was awake."
After 55 years of marriage, kids, and grandkids, Davette's husband Bob no longer recognized her. He was diagnosed with Alzheimer's disease several years ago and eventually became so hostile that he called the police, believing his wife was a stranger in his home. And after Riverside County Sheriff's deputies responded to her La Quinta house for the third time, Davette felt forced to leave.
"It got to the point by late 2020 where I had to go and stay at a hotel at night because he didn't want me here," Davette said. "He was ready to leave."
That's when she made the crushing decision to let him go and place him in a care facility.
"I had to start considering him as just somebody I was taking care of, instead of Bob my husband," said Davette. "Because if you keep it, that person, they get to the point where you still love them, but you don't like them because of the behavior."
The day-to-day forgetfulness and hostility are part of why caregivers can burn out so fast.
The pandemic made circumstances for care exponentially worse. Dementia caregivers reported skyrocketing rates of depression from 5.9% to 60% just one year into Covid-19, according to one study from Frontiers in Psychiatry.
"Caregivers are under so much stress and oftentimes don't have supportive services to watch their loved one. They can't go to the doctor. They don't have time to exercise," said Susan Howland, the program director of the Alzheimer's Association, California Southland Chapter. "So frequently, we do see the individual who is the caregiver, actually being physically sicker than the individual living with Alzheimer's disease."
This is also often the case with caregivers helping loved ones fight cancer or any other debilitating disease. It can be what happens when you sacrifice for someone you love. Davette worked with Alzheimer's Association and attended support groups to learn patience as well as special communication skills for someone who can no longer use reason.
Davette is one of 53 million caregivers in America, according to AARP and National Alliance for Caregiving, a number only expected to shoot up as baby boomers age and live longer.
In the Coachella Valley, more than half the population of Indian Wells and Rancho Mirage is age 60 or older, while Palm Springs and Palm Desert have nearly half in that demographic, according to the Coachella Valley Economic Partnership.
But with so many people rapidly aging, why aren't there stronger social security nets for the elderly?
"Our current model for aged care is broken," said Sade Dozan of Caring Across Generations, a caregiving advocacy nonprofit. "Social Security and Medicare have not sufficiently been updated to reflect the older adults' 21st century needs. So the U.S. needs things like a long term care insurance program. And this isn't the case for other countries; other countries are truly investing in their care system."
Other countries like Finland and Taiwan, which have governments that provide publicly-funded guaranteed care for elderly citizens, with recipients given options to receive care at home or at a facility -- because these countries see long-term elderly care as a social imperative.
In America, while Medicare and Medicaid offer either coverage with long waitlists or limited coverage for people who qualify, there is no federal long term care program that works for everyone. If you need it in old age and you don't qualify for Medicaid, you are primarily on your own.
Advocates argue caregiving in America, for the old or young, is not a funding priority because it has historically been the work of black women in slavery.
"Caregiving has been undervalued, and underpaid, largely because of the historically racist patriarchal structures, reaching all the way back to the nation's founding that treated caregiving as the work of black enslaved women," said Dozan. "And that ripples throughout all of the structural inequities that we face. It's rooted in these systems. And this care work, especially paid care work, is done and performed by largely black and brown populations, a good amount of whom are undocumented immigrant women.
Women are estimated to provide more of the care, with statistics from Family Caregiving Alliance showing 66% of caregivers was comprised of women, who are also more likely to drop out of the workforce once becoming caregivers. Communities of color also suffer disproportionately when it comes to unpaid caregiver burnout rates; Hispanic and Black caregivers spend more time caregiving and see higher burdens financially, according to Alzheimer's Association.
Right now, the support Americans can receive from the government depends entirely on location. In Hawaii, there's the first-in-the-nation Kupuna Caregivers Program, which helps pay working family caregivers the costs of caring for their elders. In Washington, there's the first state-operated WA Cares long term care program to ensure working residents there can access affordable care as they age.
But in California and Riverside County, there's currently no such program or funding available for the public at large.
These days, Bob is under the care of Vista Cove in Rancho Mirage, where Davette visits him every weekend. But care facilities are costly and with only their dwindling retirement to pay for this unexpected turn of fate, the future is uncertain.
"I'm going to have to sell the house. You know, and it just is what it is. You have to come to terms with it," Davette said.
It is a bleak reality for so many elderly and their caregivers who are out of options. But advocates say it doesn't have to be this way and how we treat our elderly in the years to come can be inspired from other countries and states trailblazing for those who have been here the longest.
Recently, the Biden Administration announced a series of executive actions to improve our national caregiving model. It includes a budget to hire home care for veterans and respite care support for family caregivers but no mention of a long term care program accessible to the wider public.
This story was produced as a project for the USC Annenberg Center for Health Journalism's California Health Equity fellowship, awarded to Angela Chen in 2023.
If you have become a caregiver and are looking for resources to help with either care or your mental health, here is a list of organizations that help:
FOR SUPPORT GROUPS:
The Riverside County Office on Aging offers educational workshops on caregiver burnout and more, programs on balancing work and elder care, support groups and case management.
Alzheimer's Association offers support groups for those caregiving for loved ones with Alzheimer's. It also has a 24/7 phone helpline.
Dementia Help Center is a local organization that helps guide caregivers through a loved one's dementia process.
California Caregiver Resource Centers Caring Bridge is a caregiver support nonprofit that allows users to create websites focusing on a loved one's health journey so it's easier to share with friends and family.
Caregiver Action Network is an online forum for discussions on caregiving, mental health, and connecting with other caregivers.
FOR CARGIVING FINANCIAL ASSISTANCE:
Family caregivers may get paid if they qualify for Medicaid.
FOR CAREGIVING ADVOCACY:
Caring Across Generations
National Alliance on Caregiving
BOOKS ON CAREGIVING WRITTEN BY LOCAL AUTHORS:
Pathways: A Guidebook for Dementia & Alzheimer's Family Caregivers, Kae Hammond
