Amid NJ's senior population boom, families face many sensitive and costly care choices
Carol Barbanell was already experiencing mild short-term memory loss when she moved from Manhattan, New York, to Ridgewood, New Jersey, almost 20 years ago to be closer to family.
As she entered her mid-70s, Carol was able to continue living by herself in her own house without much help. She doted on her dogs, enjoyed time with three grandkids and transitioned seamlessly from city to suburban life.
But as her dementia progressed, Carol began to act erratically. The first sign was missing her property tax payments. Then one day she drove from Bergen County to Hoboken, New Jersey — and had no idea how she got there. Finally, Carol kept forgetting one of her last major responsibilities, feeding her dogs.
“We were at a point where there really wasn’t much of a decision,” said Ellen Feld, Carol’s daughter. “It was being made for us.”
Ellen soon entered a world that generations of sons, daughters, siblings and spouses often never consider or comprehend until it’s forced upon them: seeking care for a loved one when that family member can no longer care for themselves.
And the number of New Jersey families entering this complicated, expensive and emotionally draining world is going to grow to levels never before seen.
The Paste BN Network launched the series "Aging in NJ" to help readers navigate the byzantine world of elder care. For six months, reporters have examined data, interviewed experts and talked with families about the burgeoning need for services.
More in this series: These are the important steps in preparing to care for an elderly relative
Over the coming weeks, we will take a look at the complicated range of elder care options, from at-home care to nursing homes; how to plan ahead and pay for the costly care; how to make the difficult decision to take an elder loved one's car keys away; how to care for someone living in a distant state; whether enough services are in place to allow seniors to continue living at home; and the particular issues that aging New Jerseyans who also experience homelessness face.
As the bulk of the baby boom generation enters its golden years, the number of New Jerseyans over 60 is expected to explode this decade to 3 million residents — a jump of almost 1 million.
By 2030, for the first time, seniors will make up a larger percentage of the state’s population than school-age children. In the decades to come, that wave of older New Jerseyans will place an enormous strain on a patchwork of services that is already difficult to access.
"We're facing a real crisis," said Elizabeth Davis, executive director of Bright Side Family, a nonprofit senior care services organization in Teaneck. "If you have lived in northern New Jersey and supported that community and paid your taxes then you deserve to live comfortably here in your 80s and 90s. But that's not happening now unless you have the means. And it's only going to get worse."
New Jersey has long had the reputation as a state that retirees flee in search of lower taxes, warmer weather and more affordable homes. But it is also a state where many people stay and grow old.
Getting help for an aging family member can be a gut-wrenching experience. There are many tough choices to be made. Options are often limited — especially for low- and middle-income families. And families must navigate a maze of public and private bureaucracies.
The fear of placing a loved one in a long-term care facility has touched off movements for seniors to "age in place" in their homes or apartments. The complexities of caring for an older loved one has spawned a niche industry of geriatric care managers and elder law attorneys — for families that can afford them. And elder care is often an unforeseen financial drain.
New Jersey has the highest base cost in the nation for assisted living, ranging from $6,300 to $8,300 a month, or $75,000 to $99,000 a year.
The monthly cost for a home health aide is closer to the national average, but it’s still $5,710 — more than $68,000 a year — and that only covers six hours of care a day.
A shared room at a New Jersey nursing home, in turn, cost an average of $11,254 a month in 2021 — or $135,000 a year — and $3,300 a month above the national average. But those costs can increase substantially depending on the level of care required for a resident with dementia or other special needs.
More:Getting old in NJ is expensive. Our investigative series can help guide you
Public perceptions of nursing homes are at an all-time low following the COVID-19 pandemic, which exposed serious problems in staffing, safety protocols and infection control. Long-term care residents accounted for nearly one of every three COVID deaths in New Jersey.
Despite a slate of reforms in the wake of the pandemic, nursing home occupancy rates in New Jersey have fallen from 84% before the pandemic to 75% today, according to the state Office of the Long Term Care Ombudsman. And low-paid nursing aides — the backbone of the nursing home industry — have fled to other jobs, causing staffing shortages.
Still, the expected demand for care has not gone unnoticed by investors. Private equity firms and others have spent billions in recent years to turn nonprofit nursing homes into money-making facilities whose care is often questioned. For-profit firms control about 75% of nursing homes in New Jersey, and of those, 25% have the financial backing of private equity firms, according to a report by Americans for Financial Reform.
While more alternatives to nursing homes are being developed, such as increased at-home care options, advocates say they are insufficient and still don't receive the levels of government funding that long-term care institutions do. The movement to enable the elderly to remain at home is difficult when resources for caregivers — such as subsidized apartments and ramps, accessible bathrooms, stair lifts and other home renovations — are lacking. And growing old in a single-family home in a classic post-war, car-centric New Jersey suburb can be incredibly isolating.
Add to this the expected growth in the senior population over the next several decades and the demand for quality care will never be greater.
New Jerseyans are living longer than ever, with life expectancy at almost 78 years. But if you reach 65, life itexpectancy in the U.S. climbs to an additional 21 years for women and 18 years for men due in part to major advances in managing chronic illnesses, from diabetes to heart disease.
The downside to a longer life is the greater risk of developing debilitating conditions, including one that often requires the greatest amount of care: dementia.
While the prevalence of dementia has decreased in the U.S. in recent decades and scientists are making gains in treatment, the number of people expected to be affected will almost double nationwide to an estimated 11.7 million by 2038. New Jersey alone is expected to see the number of residents with dementia increase by almost 11% from 2020 to 2025, to 210,000 people.
"Just because there are so many older adults, we will see this rise in the number of people with dementia," said Elena Fazio, a director at the National Institute on Aging who specializes in dementia care. "The question facing us is what kind of care are we going to provide for them?”
Advocates for the elderly have been fighting for alternatives to nursing homes for years. Programs such as assisted living services in senior apartment complexes are growing, but they only serve a small fraction of New Jersey's seniors.
As Ellen Feld learned, the options for a parent with dementia are limited. And as a dutiful daughter, she felt a one-two punch of anguish — watching her mother’s condition deteriorate, and trying to get her help.
“I used to be a person who wasn’t afraid of aging,” Ellen said. “But seeing what my mom has gone through in these last few years, it’s become my biggest fear.”
Seeking guardianship
Before dementia set in, Carol Barbanell lived a full, fiercely independent life. She grew up in Oklahoma but spent most of her adult life in Manhattan.
Carol raised four children, who like their mom followed their dreams across the U.S. Single since the early 1980s, Carol focused much of her attention on art — whether painting, sculpture, embroidery, printmaking or designing jewelry.
By the time she was in her mid-70s and had settled into Ridgewood, Carol's memory was worsening. She asked the same questions repeatedly in the span of a few minutes — a common sign of early dementia.
“It was becoming pretty apparent that she was having trouble,” said Ellen, who lived a few blocks away. “But then you realize that it’s actually been happening for a while. You go back in your mind and say, ‘A-ha, there were signs.’”
When Carol began to miss tax payments, the family knew there was a problem. But how bad was it? And how long would she be able to care for herself?
Like many families, Ellen and her brothers wanted to keep their mom out of a nursing home or assisted living facility for as long as possible.
But Carol didn’t think she needed any kind of help. She didn’t want aides coming into her home. She fired her housekeepers. She only allowed a hired helper to take her to the grocery store because “he seemed like more of a friend to her than someone working for her,” Ellen said.
Carol also insisted she was capable of driving. But one day about 10 years ago, Ellen received a call from a good Samaritan in Hoboken who said her mom was there in her car and confused. Carol had driven from Ridgewood to Hoboken and didn’t know how she got there.
Ellen filed for guardianship over her mother — a legal designation that allows someone to make decisions for an incapacitated person. The process, which cost Ellen a few thousand dollars, mostly in lawyer fees, took months and required a doctor to evaluate Carol’s cognitive abilities.
Guardianship allowed Ellen to have access to her mother’s money, to be able to write checks and pay bills, so the lights would stay on and there would be no tax lien on Carol’s house.
Ellen took steps to cap the amount her mom could charge on a credit card, since many seniors are preyed upon by scam artists who claim they are soliciting money for non-existent charities, computer repair services or the IRS.
Having rebuffed any professional help, Carol lived an almost cloistered life for years. She seldom ventured outside.
“She thought she was still doing everything,” Ellen said. “She’d say, ‘I did the laundry. I changed my clothes.’ She thought she was. But she wasn’t doing any of it.”
The turning point came when Ellen realized that Patrick, Carol’s dachshund, was no longer the chubby, happy dog he had long been. Carol routinely forgot to feed him.
“She was inadvertently starving her dog,” Ellen said.
“I knew for a long time that something needed to be done," she said. "But this was a turning point because there was nothing she loved more than her dog. It was the last thing she was able to take care of — and then she couldn’t.”
Ellen and her three brothers — two in Texas and one in Utah — agreed that their mom needed to be placed in a facility that could better care for her. And so in 2013 Ellen visited assisted living places within a short drive of Ridgewood.
How to get Carol out of her home?
Not only does New Jersey have the most expensive assisted living costs in the nation, but most facilities require proof that a family can pay a minimum of two to three years of care out of pocket. That amounts to $153,000 to $230,000 for a studio. But the costs can skyrocket if the resident, especially someone with dementia, needs special services.
New Jersey may be among the wealthiest states in the nation, but many seniors have depleted their retirement savings by the time they are ready to move into assisted living, advocates say.
Carol was in a better financial position than many New Jerseyans due to a sizable inheritance from her father.
Ellen found a facility in Passaic County that was clean and well-organized. The staff seemed nice and residents seemed active and happy, she said. It charged $8,000 to $9,000 a month, which the family could afford with Carol’s inheritance.
But how to get Carol out of the house? Ellen knew her mom would balk at any move.
Many seniors enter a nursing home after a medical crisis, such as a debilitating injury from a fall. Carol's family saw her on that path and wanted to avoid that, as her dementia had created a "precarious and unhealthy living situation" at her home," Ellen said.
It was a grueling decision, but the family came up with a plan. In November 2013, Carol's youngest son flew to New Jersey and took his mom out for lunch while Ellen gathered clothes and other belongings to bring to the assisted living facility.
Instead of driving Carol back to Ridgewood, he took her to the facility — her new home.
"It had gotten so bad that we had to do it," Ellen said. “I thought she was going to explode. But she was really sweet and subdued. She said, ‘You must have gone to a lot of trouble to find this place.’ You could have knocked me over with a feather.”
The memory care unit
Carol's acceptance was short-lived.
Over the next several weeks, she grew increasingly upset. She refused help from the staff and tried to leave the facility several times. She wanted to go back to her Ridgewood home, and back to her dog, who was not allowed to stay with her.
“It took weeks if not months for that to change, and then she just settled into a routine,” Ellen said. “I felt she was in a safe place and was being looked after. It was a relief.”
Carol lived for about two years in a private room where she had a semblance of normalcy amid other seniors with similar deficits. Ellen and the kids visited often with their dog.
But Carol’s condition began to deteriorate, especially following surgery to repair an intestinal tear. She was moved to the facility’s “memory care unit” — a smaller area for residents with advanced dementia. It is locked to prevent residents from wandering off — a common occurrence with Alzheimer’s.
Despite the presence of more aides in the unit, Carol fell several times, including a particularly bad incident in 2020 that left her with a head injury.
Since then, Carol has been confined to a wheelchair. Because a state law bars her from being belted to the wheelchair, Carol must have an aide with her all the time to prevent falls, including when she sleeps, Ellen said.
The additional cost of the memory care unit plus the round-the-clock aide caused her monthly bill to skyrocket to almost $23,000, which was eventually reduced to $18,000.
'That's not going to be me'
Carol has been at the facility for more than nine years. Her nest egg is running low.
“It’s horribly expensive and if she didn’t have an inheritance, I don’t know what might have happened,” Ellen said. “I’m sure my grandfather never could have imagined all of his money would go to this.”
New Jersey requires assisted living facilities to set aside at least 10% of its beds for Medicaid recipients. But it's often not guaranteed that one will be available when a resident's money runs out.
Ellen began to look into transferring her mom to a nursing home, but the assisted living facility has assured her there will be a Medicaid bed waiting for Carol when needed.
Carol has been under hospice care for months. She barely speaks these days. When Ellen visits, Carol appears to recognize her for a few, fleeting moments.
Then it just fades away.
“She’d always say: ‘That’s not going to be me. I’m never going to live like that,’” Ellen said. “But that’s what all of us say.”
Editor's note: Is your family going through the process of getting care for an older loved one? Do you have tips for other families? If you'd like to share your story, contact reporter Scott Fallon at fallon@northjersey.com.