Older Americans are often unprepared for long-term care, from costs to location to emotional impact

MANKATO, Minnesota – Seven difficult weeks passed with her husband in the hospital before Nancy Gag Braun found long-term care for him.

From 2019 until 2022, Braun cared for Steven at his home in Mankato. A traumatic brain injury in February 2019, followed by progressive dementia, eventually led to the need for professional help and hospitalization.

At this point, there were episodes where he did not recognize that the woman trying to care for him was his wife. He began to show fear and aggression towards a person he considered strange in his home.

“I knew it wasn’t him; it was the disease,” Braun said. “It was really sad that he had to go through all that.”

Not knowing where to turn, she started calling long-term care facilities one after another. But her advanced condition made it difficult to secure a place. She eventually hired him at BridgeWater, a specialty nursing, memory care and assisted living facility in Janesville.

While she is grateful for the care he received there, it wasn’t the long-term stay she had hoped for. Steven died at age 78 on November 23, 2022, six weeks after arriving at the facility.

But Braun’s struggle to find long-term care for a loved one is an experience shared by many families. And many of them are not prepared for what can be an emotional, costly and guilt-inducing process.

Planning ahead helps, but a 2021 AP-NORC poll showed that most Americans don’t discuss the possibility of long-term care, much less prepare for it.

Braun, a retired city employee, was aware of the resources selected for people in her situation and had some savings to invest in such care. Still, during that difficult time, she said she wished there was more help available.

“I don’t think there’s enough information out there for people to know,” she said.

Resources Braun found helpful included a social worker from her health care provider, Mankato Clinic, who connected her with the Minnesota Senior LinkAge Line. The statewide service connects seniors to local resources, including long-term care facilities.

Finding the right long-term care option in many cases depends on who has an open position and can accommodate a specific person’s needs. As Braun discovered, few places would take her husband because of his complex behavioral condition.

Data at the state and federal levels can guide families toward one facility over another. Minnesota’s nursing home report card system, for example, lists searchable star ratings by location. Want to know what the last state inspection was like? What did families say in recent surveys? How many single bed rooms does a facility have? Check the bulletins.

Staff retention, use of temporary staff, and direct service hours are also taken into consideration. People should consider other sources, the site advises, as well as visiting a facility and discussing specific needs with staff.

Nationally, the Centers for Medicare & Medicaid Services maintains a five-star quality rating system. Here, consumers can find ratings based on health inspections, staffing, and quality measures by location.

Companies offer similar services to help people search for the right option. One website, A Place for Mom, uses a mix of residents, resident families, and industry experts to rate facilities on a variety of metrics.

John Landas’ search for long-term care for his parents began with an online search. From there, he visited facilities, sought information from friends and used intuition to inform the choice he and his parents made.

Jake and Joan Landas moved from what had been their West Mankato home since 1970 to New Perspective Senior Living about two years ago. She had already lost her vision and he was dealing with dementia, qualifying them for insurance benefits that covered much of her care. Their son is an insurance broker and helped them set up the business.

Paying insurance premiums for 25 years quickly proved worth it once they needed long-term care.

For John, his only son, it removed the burden of an otherwise emotional moment.

“It was a huge blessing to have that financial pressure and not have it be salt in the wound,” he said.

His father paid about $3,500 a year in premiums from age 60 to 85, totaling about $87,000 in total. It took nine months of long-term care to break even, Landas said, and he has now been receiving long-term care for more than two years. His mother paid similar amounts in premiums and also broke even before her death on March 23.

They purchased “unlimited benefit period” policies, meaning that long-term care benefits would be provided to them until death, as long as they qualified. Such plans are no longer offered, Landas said, and providers instead make hybrid plans that cover long-term care costs over a set number of years.

Premium costs may seem high, he said, until you need to pay for long-term care.

“Compared to nothing, long-term insurance is expensive,” he said. “Compared to pulling out the checkbook and paying for long-term care, it’s not.”

Being prepared and making the right decision doesn’t mean seeing your parents’ ages is any less stressful, he added.

“I’ve said a thousand times that they don’t prepare you for this,” he said. “I lost my mother. She passed away a month ago. My father has dementia. Until you lose a loved one, a parent, you don’t realize how hard it is.”

The move was the right decision for them, however. Their parents’ home would make it unsafe for them to remain there.

Both Braun, as a wife, and Landas, as a son, were able to play the role of advocate for their loved ones.

Landas talked about being regularly at the facility to build relationships with employees in an industry where turnover can be high. His wife brought baked goods to show appreciation for the employees, recognizing the care they give to their loved ones.

In Braun’s case, she continued to push for a place for her husband, even though few places seemed willing to accept him. Limited space in geriatric psychiatric facilities in Minnesota drew her attention to a facility in North Dakota, but she ruled out the possibility because of the distance.

Even if long-term care seems like the logical choice, the decision can still trigger feelings of guilt, as Braun learned. After caring for Steven at home became too much for her, he was in the hospital while they waited for a long-term care placement.

“I cried a lot of nights,” Braun said. “I felt so guilty.”

She visited him one day in the hospital, and as she was leaving, he kept trying to follow her home. The nurses held him down as the elevator doors closed. Tears flowed as she sat in the car.

Steven may already be dealing with dementia, but the traumatic brain injury caused by a fall onto the ice in front of his home triggered the beginning of a steep decline. One minute he seemed fine, the next he couldn’t perform the simplest tasks.

During one of his good episodes, Braun remembers him saying that he should have died when he fell because it would have been easier than what the two were going through.

“He hated what was happening to him,” Braun said.

She thinks about how unfair it was for a man who had such a thirst for knowledge to lose so many pieces of himself in those final years. Steven earned a master’s degree in biology before teaching at Minnesota State University. He took pride in teaching himself calligraphy and was an avid reader, photographer and loved listening to jazz.

Braun cried as he reminisced about Steven. In the house they shared long ago, she has a teddy bear sitting in her favorite spot on the couch, in memory of him.

As difficult as those last few years and those last few weeks of searching for long-term care were, Braun said she loved having as much time together as they did.

At least the time he had left allowed them to celebrate their 30th wedding anniversary at BridgeWater on November 6, 2022, just 17 days before his death.

For Braun, reaching this milestone was significant.

“I kept telling him how happy and excited I was that we had turned 30,” she said. “I just kept reporting it to him so he would know.”

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The percentage of the US population over the age of 65 continues to rise – and will continue to rise over the coming decades. Because nearly half of Americans over 65 will pay for some version of long-term health care, CNHI News and the Associated Press examined the state of long-term care in a series called The High Cost of Long-Term Care, analyzing everything from day care providers to adults in assisted living facilities to understanding the accessibility, staffing, and equity challenges that exist today and lie ahead.