Last Updated on May 28, 2024 by BVN
Overview: Brittany Ball, a caregiver for her grandmother, Cathy Teague, has faced challenges as her grandmother’s health continues to decline. Brittany, a part-time caregiver, has struggled with the emotional and financial strains of caregiving. She has noticed her grandmother’s cognitive decline and is considering enrolling her in an adult day program. The cost of care in California can be expensive, and placing a loved one in a facility can be daunting. Brittany is working to find a more balanced life and hopes to inspire others through her poetry.
Breanna Reeves
Brittany Ball, 31, began taking care of her grandmother, Cathy Teague, 73, in 2016 when her grandmother started to experience serious health issues, which led to her frequent hospitalization. At the time, Brittany was working full time at the Sheriff’s Department while caring for her grandmother through a few surgeries. With rest, Cathy eventually recovered.
By 2022, Brittany was her grandmother’s official primary caregiver after applying to the In-Home Supportive Services (IHSS) Program to become a care provider. Brittany stepped into the role of caregiver without any prior knowledge or formal education on what it means to be a caregiver. Through Tik Tok, her own research, and trial and error, Brittany is navigating the challenges of being a caregiver.
“A lot of the time I just feel ill-informed, ill-equipped,” Brittany admitted. “Who do I talk to?” she asked rhetorically.
But Brittany didn’t hesitate to care for her grandmother, who took custody of her and her siblings when she was just three days old. Cathy kept her grandkids from being put into the foster care system when her daughter was incarcerated — “she sacrificed a lot,” Brittany said.
Cathy was diagnosed with Parkinson’s disease, a disorder that causes unintended or uncontrollable movements, such as shaking, stiffness and loss of balance. An estimated 93,000 Californians live with Parkinson’s disease, according to 2021 data from the California Parkinson’s Disease Registry.
“My grandmother is an amazing woman,” Brittany said. Cathy raised her grandchildren to be intelligent and well-spoken. Cathy didn’t receive a great education in her youth, so she learned how to widen her vocabulary. Influenced by her grandmother, Brittany attributes her interest in writing to Cathy, who inspired her poem “Voices Carry” which highlights Cathy’s influence on her grandchildren’s lives.
Brittany has recently begun to notice her grandmother’s cognitive decline. Cathy is prone to being very confused and wandering outside at night in San Bernardino, where they reside. Brittany has to monitor her grandmother more often, making sure she doesn’t fall down the stairs and/or injure herself.
“It is very, very difficult to see such a strong woman — that could take on so much responsibility and deal with so much stress, and instill so many good values and principles in her grandkids — to see her health decline,” Brittany explained. “It’s actually really heartbreaking to see.”
Options for Care
As a part-time IHSS provider, Brittany cooks, cleans, does laundry and helps her grandmother with showering and changing. While Brittany is only considered a part-time provider, she supports her grandmother throughout the day with various activities. IHSS only covers active services, not, what Brittany calls, “idle time” toward caregiving duties such as monitoring her grandmother, sitting with her or waiting with her at the doctor’s office.
“My only issue is just the amount of time that I actually have to invest with caregiving, and then not seeing that in the amount that I get paid, or compensated for,” Brittany expressed. “It’s made my financial situation very difficult. I’ve been overdrawn a lot in my bank.” She hasn’t dealt with such financial distress since she was 21, Brittany confided.
Like thousands of caregivers in the state, Brittany feels the emotional toll of caregiving as well as the financial strain. According to a 2024 report published by the Public Policy Institute of California, many care workers earn low pay, with average hourly pay ranging from $15.60 per hour for home health and personal care aides to $20.10 per hour for certified nurse assistants.
Over the last two years, Cathy’s needs have increased, so Brittany has been needed a lot more. When her grandmother’s health initially began to decline, Brittany wanted to enroll her in an elder program called Neighborhood Healthcare’s Program of All-Inclusive Care for the Elderly (PACE). PACE is a medical, social and home care program just for seniors with locations across the Inland Empire.
Cathy was against the idea when Brittany first brought it up years ago, but with her needs changing and Brittany needing some relief during the week, her grandmother is more open to the PACE day center now.
Adult day service programs
Day centers fall under the category of adult day service programs that are available to those who do not need 24-hour skilled nursing and are alternatives to nursing home care. Adult day programs allow individuals to stay mentally and physically active, and helps prevent the decline of their abilities while interacting in a community-based setting. These programs also give respite for caregivers.
While completing coursework for a master’s degree in rehab counseling at California State University, San Bernardino, Tanya Brown conducted fieldwork at an adult day program. Brown currently works as a family consultant at the Inland Caregiver Resource Center, but got her start in the field of caregiving by working with and around caregivers at a local adult day program.
“I fell in love with the caregivers and the care receivers,” Brown said. Most of the care receivers had one form of dementia or another, something that Brown learned more about during her time there. Dementia is a general term used to define the loss of memory and other severe mental abilities that impact daily life.
While Alzheimer’s dementia is the most common type of dementia — 12% of California adults over 65 have Alzheimer’s — there are seven other common types of diseases that cause dementia, including Parkinson’s disease.
According to the Alzheimer’s Association, by 2040, one in six Californians over the age of 65 will develop Alzheimer’s, and one in five will develop dementia.
Brown loved working with and around caregivers so much that she completed her initial master’s program for rehab counseling and returned to school to complete a double master’s degree in social work and gerontology.
Now, Brown spends her time educating caregivers on placement options, how to decide which facilities are best for their loved ones, and ensuring caregivers know what resources are available.
“Caregivers are some of the most wonderful people on this earth that you will ever meet, because think of it — it’s so challenging. A lot of times caregivers take care of their loved one completely on their own,” Brown said.
Who Decides What Care is Best?
Although Brittany is the primary caregiver, she receives support from her brother, Keith Ball, and sister, Tiffany Ball, who step in and help assist their grandmother when Brittany needs a break or gets overwhelmed. Sometimes, other family members will volunteer to visit with Cathy once a month, but Brittany and her siblings are the constant family members who support their grandmother.
Brittany and her siblings have scheduled an appointment to visit the PACE day center, but that decision was made as a family. Because Cathy is a Medi-Cal beneficiary, access to the PACE day center will be available to her at no cost.
“It’s important to have these conversations. We wanted to have this conversation now because she is experiencing cognitive decline,” Brittany said. “We wanted her to be alert, aware of what’s going on and to have a say, and be able to ultimately decide what kind of care she desires.”
Part of Brown’s job is walking caregivers through the process of deciding on what care options are best for their loved ones based on diagnoses, health needs and affordability. She teaches a seven-week interactive class that educates participants on placing loved ones in different types of care facilities.
The class includes an overview of different levels of care, different types of care facilities and virtual tours of care facilities. The class is designed to equip caregivers with all the information needed to make an educated decision about what the best options are for a loved one, whether that means deciding to place them in a facility or not.
Oftentimes, the thought of placing a family member in a facility can be daunting for a variety of reasons. Stories of elder abuse, inadequate care and even guilt can contribute to not wanting to place a loved one in a care facility.
“Placement can be for a lot of different reasons. It could be because your health as a caregiver is failing, because caregiving is overwhelming,” Brown explained. “It could be because the care receiver has a higher level of care needed than you’re able to provide, so then there will be a need for placement.”
In addition to IHSS and adult day programs, other care options include assisted living facilities, skilled nursing facilities, continuing care retirement communities, hospice care and multipurpose senior services programs.
The cost of care in California can be expensive and isn’t always covered by private insurance or Medicare, a federally funded health insurance program for people aged 65 or older, and younger people with disabilities.
Skilled nursing care is treatment needed that can be delivered by licensed nurses and is utilized when a patient is transferred or discharged straight from the hospital. For skilled nursing care, Medicare will pay up to 100% for the first 20 days, but as the stay gets longer, patients are required to pay a copay, and eventually the full cost for nursing home care beyond 100 days.
For those who need support with activities of daily living (ADL) such as showering, getting dressed or using the restroom, but still want to maintain some independence, assisted living facilities provide housing and personal care. The cost of assisted living is usually based on monthly rent plus additional fees for different levels of care.
Under Medi-Cal, there are some waiver programs that will shoulder some of the costs of home and community-based services like assisted living. Eligible adults can apply for the Medi-Cal Assisted Living Waiver, but must be able to pay for the cost of personal and additional needs. Those who are granted the waiver are reimbursed by Medi-Cal for services provided to residents. The waiver is only available in 15 of California’s 52 counties.
The Burden Behind the Cost of Care
Darlene Merkler, an education outreach coordinator at the Inland Caregiver Resource Center, has worked in the field of senior care for 38 years, and has also been a caregiver herself. Merkler has worked in many different parts of senior care, including at an Alzheimer’s assisted living facility for seven years.
“It’s a hard decision, because just like anything, all these places are businesses. Their ultimate goal is to make money,” Merkler said. “But some give good care and some will give bad care, and it’s just like with any other business.”
Merkler acknowledged the costly nature of care, especially across different levels of care. For a private room at an Alzheimer’s assisted living facility, the cost could be as high as $10,000 a month.
In her role, Merkler provides educational workshops to caregivers on different topics such as self-care, different diseases, and available resources like placement agents. Placement agents are tasked with collecting information about different facilities for caregivers and help them match the right facility for their loved one, at no cost to the family caregiver.
Early on, Brittany did look into assisted living facilities, but was shocked by the cost. According to data from a 2021 survey conducted for insurance company Genworth, in 2023, the monthly median cost of an assisted living facility in California was $6,250. A private room in a nursing home facility in the state was estimated at $13,231.
“There’s no way my family can afford this,” Brittany said.
For now, Brittany and her siblings are taking each day one step at a time and are working to make sure their grandmother will be comfortable and cared for.
“We don’t want to put her into a facility, like elder abuse is real. I don’t want anyone talking to my grandmother any type of way or treating her any type of way,” she said.
Brittany recognized that caring for her grandmother without a break can lead to burnout. She’s trying to find ways to live a more balanced life when it comes to her finances, emotional health and mental health. Writing poetry is very cathartic to Brittany, and she hopes others find comfort in her words.
When Brittany isn’t caring for her grandmother, she spends her time writing poetry and prose under the pen name L.B. Autry. She’s written poems and published a book of poetry called “Telltale: A Poetry and Prose Collection.”
“I’m a strong believer in God and have faith that He’ll work everything out,” Brittany said.
This fall, during National Family Caregivers Month (NFCM) in November, Brittany will release her second installment of poetry and prose called “Pray Tell: Adventures in Caregiving.” In this series of poems, she draws on her own personal experience with caregiving and shared experiences among other caregivers she has come to know.
According to the California Department of Social Services, 500,000 individuals in California are enrolled as IHSS providers, but thousands more work as caregivers in other capacities and settings.
Merkler has worked in the field of caregiving for so long and has noticed many changes about the workforce, notably the inability to find good and dependable caregivers. Turnover with caregivers is frequent due to the workload and low compensation, Merkler explained.
As California’s aging population continues to grow, researchers at the Public Policy Institute of California project that home health and personal care aide jobs will increase by 29% by 2030. It’s too soon to know how much longer the demands of the job and concerns over fair compensation rates will continue to attract enough caregivers to keep pace with the state’s growing demand.
This article is the second in a year-long series called Care in the IE – Will You Care for Me? This reporting is supported by a grant from the United Domestic Workers of America.