The profile of the family caregiver in America is changing. A new study from the National Alliance for Caregiving and AARP finds that although the “typical” family caregiver is a 49-year-old woman who takes care of a relative, caregivers are becoming as diverse as the American population.
It’s often assumed that “the elderly” and “family caregivers” are homogenous groups, but it only takes a walk down any block in a major city like New York to realize how far that is from the truth. There are nearly one and a half million older adults in New York and the aging of the population will push that number closer to 1.8 million over the next 15 years.
By 2030, there will be more older New Yorkers than elementary school children for the first time in the city’s history. As more family members become caregivers, many find themselves squeezed by their ethnic ties and cultural expectations on the one hand, and modern struggles with work, the high cost of city living and their own needs on the other.
Caregivers also say that finding and accessing the resources that could help them is frustrating, time consuming and often impossible. Instead, caregiving becomes a tap dance within a fragmented system that is often pieced together month by month or even week by week.
Soli’s Story
“i think there’s a stigma about talking about the reality of it, said 53-year old Soli Davis. ”it’s a very emotional journey.”
Davis’ mother has Parkinson’s disease, spinal stenoisis, vascular dementia, diabetes, high cholesterol, and high blood pressure. So five years ago, she moved in to her mother’s apartment on the upper west side of Manhattan to care for her.
Her half-Japanese, half African-American heritage means a strong tradition of caring for older relatives. “In my family it’s not even an issue,” said Davis. Before becoming her mother’s caregiver, she helped to care for her father and her grandparents.
‘’In my family, it’s not even an issue that I’d take care of my mother” — Soli Davis
Like other caregivers, she gave up her own apartment, her business, and much of her independence. “I’ve had businesses. Businesses come and go. Your mother you only get once,” she stressed. “Besides, we have a great relationship. We always have, so even if her needs are a lot, she’s not particularly clingy. And despite all of her health issues, she’s still one of the wisest, most loving people I’ve ever met.”
Davis credits her Japanese heritage with providing a different perspective on caregiving than many of her peers have.”In Japan to be of service is a privilege and an honor. It’s not to be subservient or a servant,” she explained. “I think there is a big difference culturally in America. I don’t know that the job of a caretaker is really respected here. If I go back to Japan, yeah, I’m a good daughter, but it’s completely expected.”
However, like many family caregivers, she is frustrated with the processes of juggling multiple appointments, multiple providers, multiple agencies, cutting through red tape and waging seemingly endless battles to get her mother appropriate home and community support services.
“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?” Her biggest complaint is that no umbrella exists to help caregivers find or coordinate the “kitchen sink” of federal, state, city, and neighborhood services.
The nation, intensified
New York City is in many ways an more intense version of the nation as a whole, according to Carol Levine, Director of the United Hospital Fund’s Families and Health Care Project. The project focuses on developing partnerships between health care professionals and family caregivers.
“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,” she explained. At the same time, there are more women in the workforce, families are smaller than in previous generations and more families are living further apart. Caregiving, especially among those who feel the strong pull of cultural tradition, becomes that much more stressful.
“You could call it the perfect storm, or you could call it an opportunity for someone to step up and do the right thing. It’s kind of both,” Levine said. 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 to make their roles less stressful.
Jasmine’s Story
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.”
“I love my grandmother and I love my mother; The experience taking care of other people, it really changes you. You have to meet the challenges as they come. It’s a juggling act, really. It’s a lot of work-life balance issues. But it’s definitely worthwhile.” — Jasmine Pearlman
Three years ago, that strong grounding in family ties prompted her to move her newly-widowed grandmother up 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 in a minute.
Levine noted that most issues caregivers face are universal, but they present themselves in very specific ways depending on the family structure, the relationships, the community and on family or caregiver resources. “You have the same problems of someone needing care, the system not being responsive, but then how does that play out in real life? It’s very different.”
Jerome’s Story
“I’m her caregiver. We tried to bring in a couple of people but it just didn’t work out. So I’m providing all the services that she needs right now.” — Jerome Brown
Brooklyn resident Jerome Brown, age 57, had to quit his full time job to care for his wife, Linda. Over the last few years, she underwent gastric bypass surgery followed by quadruple heart bypass surgery. She also battles severe diabetes. Brown said his wife’s ability to walk 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 would like to take her out more often but many of the places they used to frequent lack appropriate wheelchair accommodations. He struggles with the frustration over getting city services for his wife.
“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.
Caregivers said it’s tremendously challenging to learn about local services that are both appropriate and affordable.
New York City is making a concerted effort to help family caregivers more easily and quickly find community resources and figure out what services they do need, according to Robin Fenley, Ph.D., deputy assistant commissioner in the 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, like elder law or home care, that they might not have thought about,” she said.
Davis said it’s not that simple. “311 is a great program,” she said, referring to the city-run help line. “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 said that finding information about services, is too difficult. “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. I did a lot of research on the web and I’m lucky to have a really great pharmacist. I ask him a lot of information.” Brown said he finds “a lot” of great information online but it takes time and effort to get it.
The CARE Act, which mandates improved medical instruction to family caregivers upon a patient’s discharge from the hospital, is awaiting New York Governor Andrew Cuomo’s signature (as of this writing). That should help caregivers like Brown avoid similar situations.
Fenley said caregivers can call the Department for the Aging when faced with any type of care need for an older adult. A team of experienced social workers will step in to help funnel the person to appropriate services in their area. “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. “I cannot stress enough to advocate on your own behalf, find organizations in your area. There are advocacy agencies around, this is what they do. That’s how change happens.”
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 Reverend 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.
The 70-year old minister 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.
Many in his congregation are just beginning to deal with similar caregiving issues. “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.”
“When you’re dealing with people who are in the grip of Alzheimer’s that changes the whole picture.” —Pastor Robert Foley Sr.
Foley said that until about 15 years ago, Alzheimer’s was not generally known in the Black community “because most Black people didn’t live long enough to get it.” Black men would often die in their late 50s, and Black women in their mid 60s.
For many in his Bronx community and elsewhere, accessing services often comes down to one thing. “Those who have wealth — and I don’t mean wealthy like Bloomberg or Donald Trump — but persons who have a wealth of financial resources, don’t have the problem that most people in the community have. They seem to be able to get services almost at the snap of a finger.”
For everyone else, especially those in lower economic brackets, Foley said it is extremely challenging to even learn what services even exist, let alone to be able to afford them. If it wasn’t for Medicaid, many in this community “would be up the proverbial creek without a boat and without a life jacket.”
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. “Our community partners recognize that it’s important to hire staff predominantly from the community they serve.”
She said it would be impossible for DFTA to hire enough people internally who speak the 140-plus languages and dialects of New York. Instead, they rely on their local contractors, almost all of whom have someone who speaks at least one other language.
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,” she said.
Pastor Foley wants to see information like this spread to members of his community. “Education, notification, can go far in helping people have a greater awareness of the issues that the elderly will more than likely be confronted with before they exit planet Earth,” he said.
Many in his congregation lack a realistic view of the aging process and he wants the city to offer more local workshops and seminars to increase awareness of services and financial support options. “So far no one from the New York City Department of Health or any state agencies have reached out to me or to my knowledge, to any of my colleagues here in the Bronx to offer any resource people or any information on issues regarding elderly experiences.” There is especially strong interest in issues like end of life planning and elder law.
Taking the Next Step
Once a caregiver does learn about available services, the next challenge becomes coordinating that care. “An urban area has some advantages in that there are multiple options, but then it can be very confusing, and it’s very hard, harder than in small town America or middle town America to get things coordinated , to make things fit together,” according to Levine.
It might be because an urban area like New York City has many small groups of service providers and small groups of family members and patients, rather than just a few providers who service an entire town, she explained. “It is far more complicated for an individual family or family caregiver to get what they need here.”
Having the patience to wade through multiple web sites, sit 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.
“It’s a patchwork and if you’re very resourceful and persistent you can put together a reasonably good set of services that are appropriate for a person, but it takes a lot of time and you have to follow up,” Levine cautioned.
Jasmine 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.”
Despite their best efforts, caregiver burnout and stress are real and are not about to disappear any time soon, said Levine.
Caregivers say information should be easier to find. More programs and services are needed, especially in low-income neighborhoods. And, there is a need for better ways of coordinating services tailored to the needs of individual families
All of this 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.
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The profile of the family caregiver in
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