We were so confused.
My wife’s mother was going through medical issues that could potentially have left her needing long-term care. But we had never taken a hard look at our options if that happened. She lives 2,000 miles away, and we all had to start thinking about what the next steps would be if things did not go well with her. And we had no idea where to start.
We didn’t even have the vocabulary: What’s the difference between assisted living and a nursing home? So we began to study, and visited an assisted living facility near our home to get a sense of our options.
In our ignorance, we were like a lot of other people. Few of us are prepared, or even want to think about, the options for our parents — or, especially, for ourselves.
“Even the most sophisticated people have no idea what these things mean,” said Daniel Reingold, president and chief executive of RiverSpring Health in New York. And yet, he noted, while aging happens gradually, the need for long-term care can arise suddenly. “Frequently, the decision-making process comes in a crisis,” like when a parent falls or begins to wander the neighborhood, he said.
It’s easy to see why people don’t plan ahead. Infirmity and mortality are frightening. Ruth Katz, senior vice president of public policy/advocacy at Leading Age, an industry group representing nonprofit senior service providers, said, “People don’t like, in the prime of their lives, to think about the possibility that you’re going to need help doing very personal things,” including going to the bathroom and getting out of bed.
Research from the Department of Health and Human Services suggests that more than half of Americans now turning 65 will need long-term care and services, and one in seven adults will have some kind of disability for more than five years. Infirmity, then, is predictable, and is, at least, something we should plan for.
But then there’s the cost. “People think they have an issue paying for a college education — wait ’til you see how much long-term care costs,” said Nicholas Castle, a professor in the School of Public Health at West Virginia University.
The Health and Human Services report says someone turning 65 today will pay, on average, $138,000 for their long-term care, with families paying about half the cost and the rest picked up by public programs and insurance. The average cost of living in a private room in a nursing home is more than $90,000 a year, which beats even Sarah Lawrence.
This, then, is an introduction to the basics of long-term care, to help you start your own search more informed — whether you are planning for the care of a parent or yourself.
STAYING HOME When trouble strikes, what most people want is to stay at home as long as possible, with assistance from family or paid assistance that can include a home care aide or nurse. That option can even include retrofitting the home with features like ramps and grab bars. (Health insurance and Medicare might pay for some of those services, for a certain amount of time.)
INDEPENDENT LIVING Some people decide to move to independent living complexes, which can offer a sense of community and activities while letting somebody else take care of some of the irritations like lawn care, housekeeping and cooking meals.
ASSISTED LIVING For those who find themselves unable to live independently, however, and need help with activities of daily living — which can include help with getting dressed, going to the toilet and sorting medications — this is an option.
It can have much of the look and sensibility of independent living but with a higher level of care and monitoring. Many of these facilities also offer what’s known as memory care for people with cognitive impairment like Alzheimers and other forms of dementia.
NURSING HOMES These facilities provide round the clock care for people with more serious health conditions. Many people resist the idea of nursing home care, though the facilities are regulated under federal law, unlike assisted living facilities, which are regulated under a patchwork of state laws and vary widely. Nursing homes generally qualify for a substantial degree of coverage under Medicare.
For many people, nursing homes can be the best option, Ms. Katz said. “Friends will say to me, ‘I think it’s time for my mom to move into someplace where she will get some help — I don’t think she needs to go into a nursing home. She only needs assisted living.’ I want to ask, ‘What do you mean — and what do you think you mean?’”
Some facilities known as continuing care retirement communities offer a blended approach, which allows residents to take on additional services as they need them. It can be an expensive option, with costs rising as the level of care rises.
Professor Castle of West Virginia University recommends careful shopping, with visits to facilities and an eye out for hidden costs. “It’s a bit more complicated than buying a car,” he said. And, he added, a family might need care quickly, “but the correct care might not be the correct care for the next two or three years.”
Then there is the question of whether the kind of care that’s needed is even available where you live, especially in rural areas where options can be few. “You can have some of the best nursing homes around in your location, and it doesn’t mean they’re going to have a bed,” he said.
When planning for parents, it’s important to ask what they want. My mother-in-law told us that she had worked as a nurse in a nursing home, years ago, and the experience was a sad one. “I don’t want to be in a place like that,” she said, though she acknowledged that many facilities have most likely upgraded since then.
She did not want to move out of her home unless she absolutely had to. Ultimately, she was able to get by with some help at home for a number of weeks until she had fully recovered. Still, the research we had done was helpful; we felt that we could confront the future with a little more confidence the next time these questions came up.