Photo: Rev. Robert Foley Sr., 70, helps care for his mother, age 93.
NEW YORK, N.Y.--The profile of the family caregiver in the United States is changing. A new study from the National Alliance for Caregiving and AARP finds that although the typical family caregiver is a woman, age 49, who takes care of a relative, caregivers are becoming as diverse as the American population.
It is often assumed that “elders” and “family caregivers” are homogenous groups, but it only takes a walk down any urban block today to realize how far that is from the truth.
New York City alone, for example, now has nearly 1.5 million older adults, which is growing. By 2030, there will be more older New Yorkers than elementary school children for the first time. Increasingly, family
Jasmine and Jerome:
Two Caregiving Stories
Jasmine Pearlman does not fit the mold of a stereotypical middle-aged caregiver. She was only 21 when her mother was diagnosed with non-Hodgkins lymphoma. Over the past 11 years, she has helped her mother through bypass surgery, angioplasty and an amputation.
“A lot of people told me to tend to my own life, and not worry so much about my mom because I was so young,” she said. But despite her youth and inexperience, she said that her Caribbean heritage taught her that “the family unit comes first. Life doesn’t back up because we’re young.”
Pearlman sifted through mounds of research to find services for her mother and grandmother. She then went a step further, because “you can’t just sit on your computer and find out what you need, or look for different organizations. You have to go in person and talk to them.”
Even with outside help, a personal support system is a must, emphasized Pearlman. “You have to get to know other caregivers and have other people in your life that understand what you’re going through. That’s the foundation for being a successful caregiver.”
Then in 2012, Her strong grounding in family ties prompted Pearlman to move her newly-widowed grandmother to the Bronx from Florida, to live with her. The experience was quite different--and much more challenging--than with her mother.
“She was highly uncooperative,” Pearlman said. “She didn’t want me to know anything about her health status, her medical problems . . . or even that the sky was blue. It’s very difficult to care for someone when they won’t cooperate.”
Eventually her grandmother returned to Florida to live near other relatives, but Pearlman said she would do it all over again.
Jerome and Linda
Brooklyn resident Jerome Brown, 57, had to quit his full time job to care for his wife, Linda. In recent years, she underwent a gastric bypass followed by quadruple heart bypass surgery. She also battles severe diabetes. Her mobility has spiraled downward, from cane to walker to wheelchair. “She fractured her foot in four places but because of the diabetes, didn’t realize it at first,” he said.
Brown would like to take her out more often, but many of the places they used to frequent are not wheelchair accessible. Trying to get city services for his wife is frustrating, he added.
“When I had money in the bank, no one wanted to talk to me,” he said. “Now that I’m unemployed and she’s on Medicaid, it’s like they can’t fall over themselves fast enough.” Most often, however, he relies on the support of his church because the members know the couple and don’t try to provide a “one size fits all” solution.
“I think there’s a stigma about talking about the reality of it,” said Soli Davis, 53. ”It’s a very emotional journey.”
Davis’ mother has Parkinson’s disease, spinal stenoisis, vascular dementia, diabetes, high cholesterol and high blood pressure. Five years ago, she moved into her mother’s apartment on Manhattan’s Upper West Side of to care for her.
Her half-Japanese, half-African American heritage means a strong tradition of caring for older relatives. Before becoming her mother’s caregiver, Davis helped care for her father and grandparents.
Like other caregivers, Davis gave up her apartment, her business and much of her independence. “Businesses come and go. Your mother you only get once,” she stressed.
Besides, Davis continued, “Despite all of her health issues, she’s still one of the wisest, most loving people I’ve ever met.”
Crediting her Japanese heritage with providing her a different perspective, David explained, ”In Japan to be of service is a privilege and an honor. It’s not to be subservient or a servant. I think there is a big difference culturally in America. I don’t know that the job of a caretaker is really respected here.”
However, like many family caregivers, Davis is frustrated with the processes of juggling multiple appointments, providers, and agencies.
“I’m lucky in that I happen to navigate systems well. But if you’re not someone who is progressive and proactive, what happens to that mother, or one without a son or daughter who is unwilling or unable to sacrifice?” Davis’ biggest complaint is that no umbrella organization exists to help caregivers find or coordinate the “kitchen sink” of federal, state, city and neighborhood services.
Like the Nation, But Intensified
“Everything that’s happening elsewhere is happening here, but in a more compressed environment, with many more moving pieces and more languages, cultures, groups and heritages,” said Carol Levine, who directs United Hospital Fund's Families and Health Care Project. The project focuses on developing partnerships between health care professionals and family caregivers.
With more women in the workforce, smaller families than in previous generations and more families living further apart, caregiving for those feeling the strong pull of cultural tradition, becomes that much more stressful.
Various federal and state efforts are underway to enact legislation protecting family caregivers from employment discrimination, train them to properly care for loved ones upon hospital discharge and provide other support.
Caregivers say it’s tremendously challenging to learn about local services that are both appropriate and affordable.
New York is making a concerted effort to help, according to Robin Fenley, Ph.D., deputy assistant commissioner in the City’s Bureau of Long Term Care, New York City Department for the Aging (DFTA). “We work with family caregivers to provide training and information on many aspects of care,” she said.
But Davis said it’s not that simple. “311 is a great program,” she said, referring to the city-run helpline. “But if a senior is alone, there is no way for them to navigate that and go through telephone trees or get through the city’s website.”
She went on, “I’m not cowed by bureaucracy, but how is a 90-year old going to navigate a website that even someone half their age has trouble navigating?”
Family caregivers frequently find themselves in situations they may not be equipped to handle, such as when a loved one is discharged from the hospital with medical needs but little information or instruction.
Jerome Brown faced that challenge after his wife’s surgeries. “It was scary, really scary,” said Brown. “I didn’t get a lot of information on how to care for her.” He ended up getting what he could researching the Web, and asking their pharmacist.
New York State's CARE Act, which mandates improved medical instruction to family caregivers when a patient is discharged from a hospital, is awaiting Gov. Andrew Cuomo’s signature.
Fenley said caregivers can call the city’s Department for the Aging when faced with any type of care need for an older adult. “A case manager will work with the caregiver to figure out a plan and importantly, how to afford it,” she added. If neighborhood services are not adequate, Fenley said, caregivers need to speak up to their city and state elected representatives and demand more support.
But, as Davis pointed out, “Who has the time? I’m up at 5:30. By noon, I’m halfway through my day. I’m looking for the most expedient way to solve the problem, not looking to create infrastructure. It should already exist.”
A Bronx Tale
“I don’t think people in the community have an awareness of the resources that are available. A few may. I share information that I may have,” said Rev. Robert Foley Sr., pastor of the Cosmopolitan Church of the Lord Jesus in the Fordham Manor section of the Bronx.
“I advise them to engage the social worker at the hospital and the primary physician, and consult with them,” he added.
Foley, age 70, helps care for his mother, who is 93. After several years in an assisted living facility, she developed Alzheimer’s and is now in a nearby nursing home.
“That problem is becoming more widespread throughout all communities, black, white, Latino and others,” he said. “This has not always been the case. I can remember a time when the very word Alzheimer’s was not even part of our vocabulary.”
New York City’s broad cultural, ethnic, and economic diversity requires an equally broad range of services for both older adults and their family caregivers. This is a high priority at the Department for the Aging, according to Fenley.
For interpretation in the 140-plus languages and dialects of New York, DFTA relies on local contractors. Additionally, cultural competency is included in all DFTA training. “Service is only as good as the person providing it. If providers are open to the diversity, both culturally and linguistically that’s out there, it improves the quality of the services delivered,” Fenley said.
Taking the Next Step
A major challenge is coordinating that care. Wading through multiple websites and sitting on hold for hours with multiple agencies and providers can become a nearly full-time job. It becomes even more challenging for those who are not native English-speakers, have problems with literacy or who don’t fully understand the complexities of the U.S. health care system.
Despite their best efforts, caregiver burnout and stress are real and are not about to disappear any time soon, said Levine.
More programs and services are needed, especially in low-income neighborhoods. That takes funding, which is in short supply in the city’s 2016 budget. More money is allocated to some services like home-delivered meals, but advocates charge that little has been set aside for other caregiver support programs, despite the increasing demand.
According to the Mayor’s office, more case management and program funding is slated for the 2017 fiscal year, although nothing has been finalized. In the meantime family caregivers say they’re just getting by as best as they can, one day at a time.
Liz Seegert reported a longer version of this story for WBAI Pacifica Radio and the HealthCetera website supported by a Journalist in Aging Fellowship from the Gerontological Society of America and New America Media, sponsored by the Silver Century Foundation. Listen to the story here.