Frances Johnson spent 25 years in estate planning, helping clients prepare for an uncertain future while doing the same for herself.
Johnson thought she had built sufficient retirement savings by 2010 when she moved home from Atlanta to help care for her aging mother.
That uncertain future arrived two years later while celebrating her mother Maybelle’s 80th birthday in Las Vegas.
Johnson spent six weeks in the waiting rooms of a Nevada hospital as Maybelle recovered from a stroke. They returned on a costly medical flight that forced Johnson to open a $14,000 line of credit on her northeast Oklahoma City home. Maybelle returned to a stack of medical bills her insurance didn’t cover.
The ordeal thrust Johnson into the world of caregiving, where life savings and endless days can be spent helping loved ones live.
There’s no way to say for certain how many Oklahomans share Johnson’s circumstances. The current best estimate of 530,000 family caregivers is five years old and comes from the state AARP. That organization, which focuses on issues affecting those over the age of 50, valued the unpaid work of state caregivers at $5.8 billion in 2017 — a cost savings for the state that advocates say justifies public support.
In September, a federal caregiving advisory council recommended easing family caregivers’ tax burden based on the amount they spend on care. Twenty-five states and Washington D.C. have some form of tax break for caregivers. The only existing resources in Oklahoma target caregivers of children.
A measure that advocates call a modest first step for caregivers of aging Oklahomans died in the state Senate last session after passing the House by a vote of 84-2.
Johnson said she would use the money saved from a tax break to make their home more accessible and safe. A series of strokes have left Maybelle bedridden. Their home lacks central heat and air. They rely on gas for heat, making at-home oxygen therapy for Maybelle impossible.
“I used to be a little prideful, but I have learned that gifts of the heart are what we should accept and just be grateful for,” said Johnson, 64. “And so that is my whole philosophy. I’m very thankful for whatever could be a gift or help.”
Johnson returned to work briefly when her 401K ran dry, cobbling together a schedule of discounted and free care through state agencies and nonprofits. She retired at age 62 when their main at-home nurse resigned.
She spends her days preparing Maybelle’s food, changing and turning her to avoid bed sores. A hired assistant helps with Maybelle’s baths. A state program offering families alternatives to nursing home care reimburses Johnson for some of the work, and she also gets paid through Social Security.
“I’m kind of at a third of what I used to make, and I live very simply now,” Johnson said.
One in 5 Americans is expected to reach age 65 or older by 2040. According to a Blue Cross Blue Shield report, Oklahoma has a higher caregiver demand than most states because of an older average population and greater health disparities.
State data shows 2,417 caregivers received services such as nutrition education, legal assistance and congregate meals in 2022 through the state Department of Human Services. Many caregivers burn out because they are unaware of the services that are available, said Blair Schoeb, CEO of the Areawide Aging Agency in Oklahoma City.
Johnson said she depleted her retirement savings so quickly because she didn’t know about more affordable care options. As she realized others in her community face similar challenges, a vision emerged for a business that helps clients age at home instead of in a long-term care facility.
She’s developing a business model called A Link to Connect through classes at the University of Central Oklahoma and training through Progress OKC, a nonprofit organization supporting under-resourced communities.
“A lot of it is just easing the mind because it can be overwhelming if you’re saying, ‘How can I do this on my own?’” Johnson said. “Or ‘How can I do this when they need so much help?’ And there are resources out there that you could think about first.”
Financial support is among the greatest needs, according to a 2016 DHS caregiver survey. An income tax credit for caregivers had strong support among Oklahoma voters 50 years and older surveyed by AARP.
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Two Republican state lawmakers took aim at that need in March by introducing the Caring for Caregivers Act, which would reduce the tax burden for eligible purchases related to care. The bill targets those caring care for a family member over 62 who needs help with at least two everyday activities.
The bill co-sponsored by state Rep. Tammy West, Oklahoma City, and Sen. Frank Simpson, Springer, would have created a tax credit cutting a family’s state income tax burden by the equivalent of half of their expenditures on home improvements to increase accessibility, equipment purchases, adult day care or home care assistants.
The credit would cover up to $2,000 in taxes or $3,000 if the family member is a veteran or has dementia. A single caregiver with a state median income of $28,944 would pay no state income tax using the full credit.
Chad Mullen, the AARP state advocacy director, called the proposal a small first step to recognizing caregivers’ unpaid work. After passing the House overwhelmingly it was assigned to the Senate finance committee without receiving a hearing. Committee chair Dave Rader, R-Tulsa, didn’t respond to multiple requests for comment from Oklahoma Watch.
AARP Oklahoma and the Oklahoma Silver-haired Legislature, a group that works to represent aging Oklahomans at the state Capitol, helped legislators draft the language of the bill. The two groups plan to work with legislators to reintroduce the bill next legislative session.
Esther Houser, a former state ombudsman and president of the Silver-Haired Legislature, said she thinks lawmakers failed to consider how much caregivers save the state.
Caregiving offers an alternative to nursing home care during a time when many nursing homes are short-staffed, Department of Human Services programs manager Nadine Walter said. Because Medicaid covers many patients’ entire nursing home bill, one person’s stay can often cost the state thousands of dollars, she said. Medicaid can also cover at-home services, costing the state less.
Schoeb said most people agree that there’s a societal responsibility to look after aging Oklahomans.
“And while that’s undeniably true, I think we do need to be much more aggressive in terms of coming up with better ideas on how we support those caregivers,” she said.
(Correction: The spelling of Frances Johnson’s first name has been corrected).
Ari Fife is a Report for America corps member who covers race and equity issues for Oklahoma Watch. Contact her at (405) 517-2847 or firstname.lastname@example.org. Follow her on Twitter at @arriifife.