LOS ANGELES–Finding out as a college student that his estranged father had been crippled by dementia was hard enough for Bryan Gaines.
The decline in Melvin Gaines’ mental ability was one thing to grapple with, but having to provide around the clock long-term care for a man he barely knew, heightened that challenge.
His Grandmother’s Advice
“The first thing I said was there’s no way in the world that I could deal with this. I felt like this is my father, but I’m in school, and all these scenarios went through my mind,” stated Bryan, who is now an expert on aging at the University of Southern California (USC).
Reluctantly, Bryan accepted the fact that he would have to take the lead. “I thought about how he wasn’t ever there for me, and I never had a father to talk to,” he said. According to the younger Gaines, he endured a horrible, young life of pain, which included molestation and loneliness. He blamed his father for not being around, he lamented.
Gaines said the news was further exacerbated by the reality his father had no resources to help provide the quality of care he needed. His father would eventually get Medi-Cal, but died very shortly after.
According to Gaines, it was the counseling of his grandmother, a huge influence in his life, which inspired him to step up to the plate to take care of his father until his last breath.
While dementia had reunited the father and son, it also caused their spiral into poverty. “I used everything he had plus what I had to take care of him, to make all of this work. I lost so much behind this. I mean, I am almost poverty-stricken behind trying to take care of him, taking my savings and my money that I earned on my job, all the things that I had to take care of because he ran out of money,” Gaines stated.
Worried About Her Mother’s Care
Eileen Thompson has cared at home for her mother who is over age 70. Her mother has congestive heart failure, hypertension and diabetes, which all exacerbate her health and financial situation. However, living at home is important to her, Thompson shared last fall during a national conference on aging.
Thompson expressed concern about maintaining her mother’s quality of life and about receiving resources she needs in the new political climate under President Donald Trump. She was especially worried about attempts to repeal the Affordable Care Act (ACA).
Former President Barack Obama signed the ACA in March, 2010. A key benefit for seniors is that the law provides help with prescription drug costs.
“We’re going to be prayerful, and be vigilant,” Thompson stated. “I think advocacy is important, because we’re at the point now where my mother, fortunately, has private insurance, but that’s also coupled with Medicare, so most of her visits are at zero out-of-pocket for her.” According to Thompson, her mother has Medi-gap supplemental insurance, which provides copayments and other charges not covered by Medicare.
“Without that additional Medicare component, that could probably change, so we are watching. We are being mindful. We are trying to speak with our representatives and see exactly what’s going to happen with that,” Thompson continued.
Juggling Work and Caregiving
Bryan Gaines, who today is assistant director of the University of Southern California’s (USC) Hartford Center of Excellence in Geriatric Social Work, explained, “When we talk about poverty, you can start off with dealing with this disease and end up going through property as a direct result of trying to care for someone.”
Gaines said, “You’re trying to juggle and work your job. I know many people that have lost their jobs as a result of trying to be a caregiver, and that’s just part of it. I know people that have gotten rid of their homes to move in with their mom,” he stated.
According to Gaines, many working, first-time caregivers initially hire home care services, which depletes their resources, eventually forcing them to take on caregiving duties themselves. Some may qualify for home and community based care, such as California’s In-Home Supportive Services (IHSS) program, if they qualify the low-income Medi-Cal program (the stat’es name for Medicaid).
Depending on income, the cost of services may be covered entirely by the state, or program participants’ may be responsible for cost-sharing if their incomes exceed the monthly limit. Medi-Cal sets the hourly rate for IHSS services. The American Elder Care Research Organization estimates costs being between $12 and $17 per hour. Typically, the monthly IHSS cost is about $2,200, but state rules say it cannot exceed $3,500 per month, according to AECRO.
Service providers assist with daily living activities, such as bathing, dressing and transferring, housekeeping, laundry, meal preparation, personal care, shopping assistance for essential items, supervision, and transportation assistance.
‘Everything is Expensive’
“Everything is expensive, from the insurance to the Depends [adult incontinence underwear], and if you don’t have access to these services and the person doesn’t necessarily qualify for it, if they get $1 more than they’re supposed to — it’s a struggle. It puts people in poverty,” Gaines argued.
He added, “When you’re dealing with poverty, and you’re struggling, trying to figure out whether you’re going to buy medicine or buy food, there’s no quality of life there. Everybody’s frustrated.”
The system’s practice is to have caregivers who live with loved ones they are caring for to just double the task, Gaines said.
For example, he went on, “When the social worker comes out, and sits there, and looks at the time that’s going to be allocated, they say, ‘Okay, you have breakfast, too, right? So you can fix her breakfast when you fix your breakfast, You can wash her clothes when you wash your clothes,’ so all that time, that’s all cut off because you are already doing some of that work,” he said.
“Therefore the amount of money that’s allocated to you is substantially less than what you’re used to getting, so many people end up losing their cars, losing their homes, and all kinds of things trying to provide care for a family member,” Gaines added.