The best way to get started is to contact your local area agency on aging. They can help you learn more about programs you or a loved one may qualify for—such as Medicaid or OPTIONS—and provide information about adult day care centers or home care workers.
Being a sandwich caregiver is hard. In Parts One and Two of this series, we examined Pennsylvania’s care infrastructure, an expensive, confusing mess of options that leave many family caregivers to fend for themselves. Many of these caregivers feel isolated and struggle to juggle their responsibilities, and the experience can have severe financial, emotional, and physical consequences.
There is some help out there though. It’s not particularly intuitive or easy to access, but it’s there.
“It’s kind of like our healthcare system—really patchwork and not comprehensive in any real, holistic way,” said Charlotte Dodge, senior policy and government affairs manager at Caring Across Generations. “There are supports, but it also depends on who you are, where you live, and what kind of services you might be eligible for, and that varies a lot depending on the state you live in.”
Here are some of your options:
Area Agencies on Aging
In general, the best way to figure out what resources are available to you is to contact your local area agency on aging, a public or private nonprofit agency that is solely focused on the needs and concerns of older people in the region. The goal of these agencies, of which there are 52 in Pennsylvania, is to help aging adults remain in their homes, assuming that’s their preference. The agencies primarily serve adults 60 or older, but also offer help to younger people, including caregivers, disabled or chronically ill individuals, and veterans.
These agencies can help connect you with resources, help you sign up for home-delivered meals, reimburse caregivers for certain expenses, and provide information—an important service, since 85% of sandwich caregivers report needing more information on at least one caregiving related topic.
Maggie Devlin is the aging care management supervisor at the Bucks County Area Agency on Aging. If a caregiver reaches out to Devlin’s team, their case is handled on an individualized basis.
“Each caregiver is looked at in their home setting, and the caregiver is present and our care manager goes out … to see what’s going on,” Devlin said.
The agency hosts educational series for caregivers, provides support, connects them to community resources, and reimburses services and supplies, such as incontinence supplies, nutritional supplements, or assistive devices.
“We try to balance what we’re doing for them as far as the reimbursement and providing respite for them with some education on things that they may be struggling with as far as taking care of their loved ones in their home,” Devlin said.
Medicaid and OPTIONS
If you meet the requirements, you can apply for Medicaid. Also known as Medical Assistance in Pennsylvania, the program covers in-home care for the very poor and disabled (though there are long waiting lists) and long-term care in nursing homes. It can also cover transportation to the doctor and the cost of medical equipment for the beneficiary’s home, among other benefits.
If you don’t qualify for Medicaid, the state also has OPTIONS, which provides home- and community-based care for eligible individuals ages 60+. But that program, like Medicaid, has long waiting lists because of demand.
Getting Paid to Care for a Family Member
Pennsylvanians can also apply for a Medicaid Waiver program to become paid caregivers for their family members. It is not especially straightforward or easy to understand, and individuals can learn more by contacting Maximus, the state’s independent enrollment broker, at 877-550-4227, or calling the commonwealth’s long-term care helpline at 1-800-753-8827.
Home Care Workers
On the flip side, if you have the money to spare, you can hire a home healthcare worker. Angie Roman, a 61-year-old Frackville resident we interviewed for this series, spent more than six years taking care of her parents in Arizona before moving to Pennsylvania. She was fortunate to be able to hire a part-time caregiver to help her dad, and later a full-time caregiver to help her mother. With that support, Roman’s care duties were left to nights and weekends so that she could keep working full time.
But that full-time caregiver did not come cheaply. “It cost us $30,000 a year,” Roman said.
The cost of in-home care is often too expensive for families, but some are able to afford part-time help.
Finding home care workers is also an issue, however. The 4.5 million Americans—most often women of color and immigrants—who do this work are severely underpaid and lack job benefits and protections, which leaves them open to exploitation. The median hourly wage for home care workers is a measly $11.52 per hour, and in 2018, their average annual income was just over $16,000, according to one analysis of Bureau of Labor Statistics data.
The low-paying nature of these jobs have long contributed to high turnover within the field, which has only been amplified by the pandemic. As a result, there’s a shortage of home care workers, leaving many family caregivers to fend for themselves.
Adult Day Centers
Another resource for caregivers are adult day care centers, which provide care for older adults and adults with physical or intellectual disabilities who need help or supervision during the day while giving relief to caregivers who need to work, handle their own affairs, or just take a break.
There are two types of adult day care: adult social day care and adult day health care. While adult social day care provides social activities, food, recreation, and some health-related services, adult day health care offers more intensive health, therapeutic, and social services for those with serious medical conditions and those who may need nursing home care.
Age and eligibility requirements vary from center to center and a list of adult day centers in Pennsylvania can be found here.
These programs are slightly more affordable than paid caregivers, with adult day health care averaging just over $1,500 a month in Pennsylvania, according to a 2020 report from Genworth Financial. But there are also shortages that the pandemic has only worsened.
Depending on where you live, there might also be local nonprofits, charities, or other community organizations that can help. Jewish Family and Children’s Service of Greater Philadelphia (JFCS Philly) is one such place that works directly with caregivers to get them the resources they need.
“Sometimes it’s as simple as ‘I need meals, I need food, I need a food pantry. I’m looking for somebody to help me with my personal care. I’m looking for somebody to help me with activities of daily living,” said Brenda Edelman, a licensed clinical social worker and the assistant director of Older Adult Services at JFCS Philly. “What we try to do is figure out if they need the direct services and support of a care manager or social worker, or do they really just need that quick plug-in phone number to get them to the direct resource they’re looking for?”
They also help caregivers or the seniors they care for apply for assistance programs, such as rent rebates, utility bill reductions, and the Supplemental Nutrition Assistance Program (SNAP), better known as food stamps.
“We do a lot of advocacy and education to make sure they’re aware of resources and services. In many cases, because older adults are not tech-savvy, it’s not like you or me jumping online doing the application and submitting it. We need to help those older adults to access those services,” Edelman said.
Online Support Groups
As for sandwich caregivers, there aren’t many specific resources directed at them. There are support groups, though, for all family caregivers. Roman strongly advocates for joining one.
“The caregiving group called Molly’s Movement, which was specific to dementia, was really invaluable from the perspective of just that emotional support and sharing tips and tricks of how to navigate behaviors,” Roman said. “It’s so important for people who are caregiving to understand that there are other people in that scenario that would be most happy to share their ideas or just listen.”
Karin Murphy, a licensed counselor based in Doylestown, echoed this sentiment. “It’s really important for caregivers to know that they’re not alone,” she said. “This isn’t anything that you are the only one that’s going through. This is definitely something that’s becoming much more prevalent, and it does help to talk about it instead of trying to take it all on yourself.”
This can help caregivers realize they’re not alone and also get to a place where they’re okay accepting help.
“A lot of it is kind of being honest with yourself and taking a look at ‘Is there a way that I can reorganize this?’ You don’t have time to do everything,” Murphy added. “We need to learn how to rely on others to help.”
That, however, is easier said than done, according to Heidi Donovan, a professor of nursing and medicine and the co-director of the National Rehabilitation Research & Training Center on Family Support at the University of Pittsburgh.
“One of the first things we always say to family caregivers is, ‘You’ve got to find time for yourself, you have to take a break or you’re going to burn out,” Donovan said. “Respite, respite, respite. You need some respite, and it’s almost impossible to find.”
It might soon get easier, however. In the fourth and final part of our series, we’ll look at how President Joe Biden’s proposed Build Back Better Act could provide some much-needed help for sandwich caregivers.