For Erin Jakupciak and her two sisters, the path began as it does for so many — with worried conversations, uncertainty and a low rumble of doom.
Their mother, Nancy Kreibich, was strong-willed and independent. When her daughters first noticed her faltering memory, she turned angry and defensive. She stormed out of the doctor’s office to avoid taking cognitive tests and for nearly a year refused to let anyone through her front door.
But soon it became clear to the sisters that their 71-year-old mother could no longer cook, drive or live alone. Bills piled up in her house, unopened. Her phone got disconnected, her insurance policy canceled. Her daughters, with families and jobs of their own, stepped in.
“Things were derailing,” said Jakupciak, the oldest daughter, who took over as power of attorney. “When we finally got the Alzheimer’s diagnosis, it explained a lot of the behavior. She’d been masking it for a very long time.”
Growing numbers of Americans face the immense and often overwhelming challenge of caring for an aging parent or other loved one, a burden that will skyrocket as 76 million baby boomers move into their 80s and need help coping with dementia, cancer, heart disease or just plain frailty and old age.
Social trends and medical progress are working against each other. Half of the 35 million family caregivers who now assist older adults have full-time jobs. Families are more geographically dispersed. Adult children are squeezed between raising their own families and managing a dizzying array of housing needs, health care, insurance, finances and supportive services for their elders.
“We’re dealing with a system that was developed 50 years ago,” said Susan Reinhard, director of AARP’s Public Policy Institute. “This is an army, an invisible workforce that needs to be helped. You need to give them training. You need to support them. And they need a break, as if they were on a job.”
Soon, Minnesota and the nation will reach a demographic crossroad. In 2030, the first wave of the baby boom generation will turn 85, an age when people are twice as likely as those even a decade younger to need help getting through the day.
Family sizes have been shrinking for decades, which means there will be fewer adults to care for older relatives in the years ahead. By 2030, the ratio of informal caregivers to those in most need of care will be at 4 to 1, down from a peak of 7 to 1 in 2010. By 2050 in Minnesota, which has one of the nation’s longest life expectancies, there will be fewer than three family caregivers to care for each family member over age 80.
Already, hospitals, nursing homes and home-care agencies face a worker shortage. Three times more families need elder care services than the workforce can support. The responsibility will continue to fall heavily on friends and family, who in Minnesota shoulder 83 percent of the unpaid long-term care needs of older adults, according to the Minnesota Board on Aging.
“I don’t think people have really connected all those dots, other than those of us who are doing this work,” said Richard Schulz, a University of Pittsburgh psychiatry professor who led the nation’s first comprehensive assessment of family caregiving for the National Academies of Sciences, Engineering and Medicine.
In January, Congress passed legislation to develop a national strategy to support families in an aging America, the National Academies’ top recommendation. But with 18 months to devise an initial plan, many advocates continue to see a lack of urgency.
“We’ve been talking about this and studying it to death,” said Dr. Joanne Lynn, a geriatrician, hospice physician and elder care policy advocate at the nonprofit Altarum Institute in Washington, D.C. “It’s time to get angry.”
Manageable at first
Nancy Kreibich lived on a secluded country road in La Crescent, Minn., a short hop across the Mississippi River from the city of La Crosse, Wis., where she had grown up, gone to college, raised her family and worked for three decades as a social worker. Divorced, she lived alone.
As it became clear that she needed help, Jakupciak and her middle sister, Lena, checked out nursing homes and assisted living options, but concluded it was too soon. Their mother was relatively young. With some practice, Jakupciak could redirect her mother’s attention if she became confused or agitated.
To buy some time, Jakupciak and her husband, David, moved Kreibich into their Afton home.
Things were manageable in the beginning. Jakupciak and her husband both work from home, and took turns keeping Nancy busy with meals or crafts. She went to her twin grandsons’ sporting events and hung out with her daughter’s friends.
Then one of Jakupciak’s sons called her in a panic one day when she was out of town on business. Grandma was outside crying, he told her. She had her clothes in a paper bag, and said she would kill herself if she couldn’t get back to La Crosse.
“It became clear she needed to be someplace where there was more continuous care and activities going on,” Jakupciak said. “We were trying to do that, but it wasn’t working.”
Care valued at $470B
Family caregivers have been described as America’s other Social Security. The nation’s health system would go broke if it had to pay for their work, valued at $470 billion a year in free care, according to AARP. In Minnesota, every 1 percent decline in family caregiving costs the public sector an additional $30 million per year, state data show.
Public health officials see hazards ahead.
Nearly 60 percent of today’s family members do work once done by nurses, such as giving shots, providing wound care and operating special medical equipment. They spend an average of $7,000 a year of their own money.
Women, who make up 60 percent of caregivers, take on a disproportionate share of hands-on work and are more likely to jeopardize their own health and financial future.
“Caregiving is a huge public policy issue,” said LaRhae Knatterud, director of aging transformation at the Minnesota Department of Human Services. “From a purely financial standpoint, we want as many unpaid caregivers as we can get from family and other volunteers. But how do you incent them? How do you keep them well, instead of having them get sick or drop out of the labor force or use all of their money for their parents’ care?”
Unlike mothers sharing tips on the playground, those caring for older parents are isolated, often juggling their own lives and families as their loved ones become sicker and more dependent. They become awash in a sea of disjointed support services, hard-to-reach technocrats and health insurance policies that don’t pay for nearly as much as they thought.
Dawn Lindberg got lost in the confusion. Her 89-year-old mother, Elsa, has kidney disease and arthritis in her back and hips and needs oxygen full time to support her ailing heart and lungs.
Though many of Elsa’s seven children pitch in, Lindberg, the youngest, is on the front lines. She lives with her mother in two-week stretches and then goes to her own home, one hour away in Princeton, Minn., for a weekend of respite and time with her fiance. Caring for Elsa became so consuming that Lindberg reluctantly gave up her hair dresser’s license after 27 years.
Relying on several public programs available to low-income seniors and their caregivers, the family has managed to keep Elsa in her rent-subsidized apartment in Minneapolis for more than a decade, even though she has dementia and is disabled enough to qualify for a nursing home.
Even with this support, Lindberg and several siblings were spending several hundred dollars out of their own pockets each month for Elsa’s groceries, bills and medical supplies. Lindberg, 56, feared slipping into poverty herself, and knew she should be saving money for her own old age.
There was help, but they didn’t know it. Not long ago, Lindberg happened to share the family’s financial hardships with one of Elsa’s doctors. The office swung into action. Within minutes and a few clicks of a mouse, a social worker had enrolled Elsa in the state’s Elderly Waiver program, which lowered her monthly payments for services from $505 to $205 and enrolled her in a discounted meal delivery program.
Elsa had been eligible for more than two years. When Lindberg first called the county, she was confused by unfamiliar terms and questions, and mistakenly gave a “no” answer when she should have said “yes.”
“I was so appreciative the social worker could explain it to me,” Lindberg said. “It’s such a relief on the financial situation. Now, instead of us pitching in to help Mama, I have a little bit left to pay my bills.”
Advocates are particularly concerned about reaching immigrant communities, where families may not seek help because of unfamiliarity with the health care system, language barriers, fears of deportation and cultural differences.
Soraya Cazco fell into a familiar trap of thinking she should be able to do everything herself.
She moved her 79-year-old mother from New York City to her home in west Milwaukee 18 years ago. But things changed when Gloria Ramirez was diagnosed with mild cognitive impairment or MCI, a condition that sometimes is a precursor to dementia.
“In our culture, dementia is like a taboo,” said Cazco, 54, who was born in Ecuador and came to the United States with her parents and four siblings when she was 6. “You don’t talk about certain things. You try to deal with it yourself.”
As her mother’s memory worsened, Cazco and her family knitted together a plan. Cazco’s husband worked the night shift and kept an eye out during the day. Their daughter, still in college, covered mid-afternoon. Cazco raced home after her 8 a.m.-to-4 p.m. job.
Soon she felt the walls closing in. She felt anxious when away from her mother, who speaks little English, but became cranky after too much time of intense caregiving.
“I felt lonely. I felt angry,” she said. “I was angry at everybody — my family, my siblings. I would cry easily.”
A concerned supervisor suggested that Cazco join a support group, where she learned that dementia was not just a normal part of aging. She also learned ways to give herself a break, including enrolling her mother in a day program tailored to the Hispanic community.
Hers is a common refrain. Even when help is available, caregivers don’t know where to find it.
“It’s a system of hamster spinning-wheels,” said Deb Holtz, a former state ombudsman for long-term care. “There are so many good people and so many good intentions and there’s so much money being spent, but we’re still cobbling it together.”
A spiral down
Jakupciak took an unpaid leave of absence to focus on finding a memory care facility for her mother. In the meantime, the sisters temporarily moved their mom back to La Crescent when their youngest sister, Rachel, returned to the area.
Kreibich would be closer to her doctors there, and the sisters hoped the familiarity of her old home would get her grounded.
But Kreibich was spiraling. She slipped out one night, and Rachel spent hours persuading her to come back in. The next morning, she made it a mile down the highway in her pajamas before the family caught up.
Jakupciak was on her way to a planned family meeting when she answered Rachel’s frantic call. Their mother was belligerent and unmovable. They couldn’t get her off the busy road.
“It started a whole series of horrible events,” Lena, the middle sister, recalled.
The sisters were on their own as their mother’s mental breakdown unfolded that day. They tried her favorite lunch spot. Then two parks they knew she loved, hoping to distract and soothe her by pushing her granddaughter in a swing. But she became increasingly paranoid and distraught — crying, pulling out her hair, screaming and cursing at her daughters, refusing to get in the car.
Jakupciak begged the family clinic to let them come, but was told to wait two days for a scheduled appointment. Dusk was settling on the long July day.
Heartsick and exhausted, the sisters finally took the advice of a social worker at the Mayo Clinic hospital in La Crosse, and called 911.
The sisters stood on one of the busiest intersections in LaCrosse, and watched the police drive away with their mother.
At the hospital, Jakupciak and her sisters believed their mother would finally get help. Instead, they hit a new reality: a shortage there, as across the nation, of facilities and medical staff trained in geriatric psychiatry.
Though placed in a secure room on an involuntary 72-hour hold, their mother managed to escape. This time, the cops brought her back in restraints.
It took 10 days to find a geriatric psych unit in Minnesota that would take her. Jakupciak spent days faxing medical records and pleading with intake workers that her mother urgently needed help.
“My mother has money. She has insurance. She has three intelligent daughters,” Jakupciak said. “It was crazy that we could not get this solved.”
Role of government
No one disputes the need to find better ways to support families in an aging nation. Many agree it will require change on multiple fronts — more flexible workplace policies, financial relief for caregivers, improved health care coordination and more individual responsibility to plan and save.
But Americans today are deeply divided about the size and role of government. Concerns are mounting about the future solvency of taxpayer programs as an aging society taps into them at a faster rate than a diminished workforce can replenish the funds.
If not for family caregivers, “we’d be spending twice as much in our health care system today, if not more,” said U.S. Sen. Tammy Baldwin, D-Wis., who co-authored the legislation to create a national caregiving strategy. “At this time of constrained resources, looking out for family caregivers is one of the most frugal and cost-saving things we can do.”
Minnesota is considered a leader in bipartisan efforts to reduce costs of long-term care services for the elderly by shifting state and federal Medicaid dollars away from expensive nursing homes.
In 2016, more than 55,000 low- and middle-income seniors benefited from support and services that helped them remain in their homes. But Congress and the Trump administration are discussing rules that may restrict such flexible use of taxpayer dollars to try to rein in care costs.
Even in Minnesota, the pace of change is too slow, warned a detailed state-by-state assessment of long-term care services by AARP and the SCAN Foundation.
“There is no long-term care system,” said Carol Levine, director of the families and health care project at the United Hospital Fund in New York. “There is growing awareness of the importance of family caregivers, and an intent to help them. But it doesn’t translate into meaningful programs.”
Money will run out
Nancy Kreibich is now settled into a memory care facility in La Crosse where her daughters feel she is happy and well-cared for. A memory box outside her room is filled with photos of her children and grandchildren, and a tiny statue of her beloved Elvis Presley, whose songs she can still sing word-for word.
“Every step of the way I had to fight, cry and complain,” Jakupciak said. “There were about six months where we really couldn’t get her the care she needed. That was really shocking.”
Now 74, Nancy relies on a walker and needs help to bathe and use the toilet, all of which adds additional fees. The family is burning through $6,000 a month, and Jakupciak must flag the facility when they are a year away from running out of money.
After their mother has drained her life’s savings and becomes eligible for Medicaid, the sisters may not be able to keep her in the same facility. For the nursing home, it becomes a business decision, because the government reimburses at a drastically lower rate than what families pay out of pocket.
The sisters try not to think about that. Instead, they are grateful they can still enjoy their mother’s fun-loving personality, even as her body and mind continue to decline.
“As this whole dementia progresses, I find the visits are more for me,” said Lena, the middle sister. “She can’t remember a lot of the bitterness.”
When she visits, Jakupciak plans activities — baking cookies, going for a drive around town or looking through photo albums. Jakupciak puts on a game face, but fights back tears as she leaves.
“She’s slowly declining,” Jakupciak said. “You worry, what is going to be the next step? My fear is the day I walk in and she doesn’t know who I am. After that I’ll still be visiting her. But it’ll be hard. She never wanted that.”
Marquette University student Yiren Yang contributed to this report through the O’Brien Fellowship in Public Service.