Home caregivers suffer emotional, financial stress. Help is coming to Stanislaus County
A growing number of people are caregivers for loved ones, aging parents or spouses, but those in the middle-income range are not eligible for assistance through Medi-Cal or other social programs.
Jeffrey Lewis, chief executive officer of the Legacy Health Endowment in Turlock, calls them the “forgotten middle.” They are typically families or individuals caring for older loved ones with Alzheimer’s disease, dementia or other disabling conditions and are paying out-of-pocket for the expenses.
Legacy Health arranged for a research firm to survey middle-income caregivers about their financial hardships, impacts on their employment and the emotional burden.
The J. Wallin Opinion Research firm surveyed 1,721 people in Stanislaus and Merced counties in March and April, reaching them by telephone, text or social media.
“We wanted to understand what are the needs of caregivers,” Lewis explained. “It is a particular problem in our area because of (limited) access to services.”
The survey found that 72% of these caregivers are the ones mainly responsible for costs of medical expenses, supplies, transportation and food not covered by insurance or government support.
More than 75% said the costs and time spent on caregiving affect their ability to pay for their own daily and household needs. About 60% of them have pulled money from savings, increased their credit card debt or borrowed money from others to pay for caregiving.
An adult who cares for an aging parent may be working full time or operating a business while trying to juggle caregiving responsibilities such as doctor visits, getting prescription medication, housekeeping, cooking and grocery shopping.
In the recent survey, about half of participants said they had lost employment or closed a business due to the time commitment of providing care to someone at home. More than 60% said they had to cut back on their hours at work and live on smaller paychecks.
About nine in 10 participants in the survey said the pressure of caregiving has affected their physical health. And three-quarters said it impacts their mental and emotional health.
Lewis said the forgotten caregivers in the middle allow older, disabled people to receive care at home, where the vast majority want to stay. It’s widely recognized that home care relieves pressure on nursing homes and greatly reduces health care costs for the nation.
These families and individuals have waited for Congress to offer some assistance, only to have the door slammed in their faces, Lewis said.
Legacy Health is bringing partners together in the Person-Centered Care initiative to help caregivers with burnout and give them access to services.
The Turlock-based charitable foundation, dedicated to improving the health of area residents, has $650,000 to launch the program. By giving $200,000, Turlock is believed to be the first city in California to contribute to home care.
Legacy will apply for federal funding that may be available, will collaborate with nonprofit groups and also seek corporate funding for an ongoing caregiver support program.
‘Let’s work together’
Stan Brizendine of Modesto has taken care of his significant other for six years as Alzheimer’s disease has taken away her short-term memory. The disease has progressed so that she needs someone there 24 hours a day and needs help with eating and even drinking a glass of water, he said.
Brizendine said the original diagnosis was devastating. His soul mate first suggested that he go his own way to enjoy his life.
“I said, ‘You have a lot of life in you, let’s work together and go as long as we can together,’” he said. “We have had a lot of good times and I would hate to have missed that.”
As her condition gradually got worse and required more care, Brizendine, a registered nurse, was able to work fewer hours in the operating room while still earning an income that paid the bills. At 69, he is now retired.
“If someone needed to work full time and had to be a caregiver, I could see it would be a huge burden,” Brizendine said. His caregiving role is five days a week and his companion’s daughter comes in from the Bay Area one or two days a week.
Brizendine said the constant attention to caregiving is an emotional strain. He used to be able to leave home for a few hours, but now 30 minutes apart makes her fear she has been left alone.
“You wake up at night and if she is not in bed, you look for her and find doors are open,” he said.
Brizendine said they have retirement and some disability income to cover expenses, including a paid caregiver who comes in twice a week. He said she is close to needing 24-hour care either at home or an assisted-living facility. When that time finally comes, they will have to figure something out.
Legacy develops a program
Lewis said the Person-Centered Care program will launch in July to provide assistance to middle-income home caregivers to help with burnout, expenses, food and pharmacy assistance, respite care and long-term care services.
Assistance could be tailored for a person in her 70s, who’s caring daily for her spouse and feeling the impacts on her personal health and finances. It could be help with cleaning the house or going out to buy groceries, getting medication refills or buying a safety device for the home, Lewis said.
Legacy will partner with four or five community organizations that can provide specialized assistance.
The criteria will likely be middle-income families or individuals caring for an adult 55 or older who has two or more health conditions and limitations with bathing, mobility or other functions of daily living.
For seniors older than 65, the middle-income bracket may be as broad as $25,000 to $95,000 a year, Lewis said. The program details are still being hashed out.
The Person-Centered Care assistance will be for eligible caregivers in the Legacy Health territory including Turlock, Ceres, Hughson, Hilmar, Delhi, Newman, Patterson and part of south Modesto. The foundation hopes to serve 200 to 300 people a year.
County effort flies under the radar
Stanislaus County Aging & Veterans Services has a Family Caregiver Support Program that has given at least some assistance to 220 people in the current budget year ending June 30.
The agency’s program is for county residents taking care of an adult 60 or older who has a debilitating condition; it’s also for a family or individual caring for anyone with Alzheimer’s type dementia.
The support includes up to 40 hours of respite care per year, which may include meal preparation, household chores or someone to watch the person while the caregiver takes time off or runs errands.
Aging & Veterans Services works with a nonprofit to do home assessments for safety and fall prevention. An eligible family can choose between two home-health agencies, which provide the respite care services and then bill the county.
One problem: People aren’t aware of the assistance.
“Because we are part of the county, people assume they have to be under certain income criteria, and that is not true,” said Linda Lowe, a former program coordinator.
Tiffany Walter-Leijten, the newly appointed program coordinator, said to help caregivers with household equipment, the program buys a lot of walkers, shower chairs, raised toilet seats and other devices that make the home safer.
The recent survey identified strong support for providing caregiver assistance including respite care. It registered 90% support for programs offering resources for mental health.
Walter-Leijten said the advancing age of the boomer generation will increase the 60-and-older population and drive the demand for caregiver services. The county will be applying for federal money that’s expected to become available soon. Staff members are not sure yet how much or what services will be funded.
Brizendine said when he takes time for group-oriented recreation, such as tennis, it seems that anyone he meets has been involved in caring for a family member with dementia or Alzheimer’s disease.
An estimated 6.5 million older Americans have Alzheimer’s disease, a number that’s expected to double by 2050, according to the Alzheimer’s Association.
“It is exploding in the 50-and-above group,” Brizendine said. “If you look at the statistics, it is staggering.”
The Family Caregiver Support Program has assistance for eligible caregivers who live in Stanislaus County. The first step is calling the county’s senior information line at 209-558-8698.
This story was originally published May 26, 2022 at 9:44 AM.
