Mom is getting on in years, and she's not getting around as well as she used to. She dreads the thought of being stuck in a nursing home, and so do you; but where else can she go?
What's called "assisted living" may be the best option for an older person who doesn't need round-the-clock nursing care, but who needs some help with daily activities and occasional medical attention.
At the moment, however, the definition of assisted living is vague -- and in many people's minds, it's just a euphemism for a nursing home. There are some generally agreed-upon differences, but "there's no standard model" for assisted living, says Lauren Jones of AARP.
That means shopping around for a place for your older loved one to live can be a confusing experience.
"I think the biggest question right now is figuring out what assisted living is," says Bradley Schurman of the Assisted Living Work Group (ALW), a group of doctors, nurses, consumer advocates, and industry representatives appointed by the US Senate Special Committee on Aging to develop national standards for assisted living.
An assisted living facility could be "a trailer in the back of somebody's yard," Schurman says, or "500 apartments in a gleaming tower in downtown New York." That's how widely definitions and regulations differ from state to state.
What's more, "costs vary greatly," Jones says -- typically ranging from $1,000 to $3,000 a month.
The ALW recommendations are due to be presented to the Senate in April 2003. Until national standards are put in place, shopping for an assisted living arrangement will be a headache, unless you know what you're doing.
Assisted Living vs. Nursing
Jones says the main difference between assisted living and a nursing home is "the level of care someone needs." She says a nursing home would be the right choice for someone who doesn't need to be in a hospital, but who needs fairly constant nursing care. An assisted living facility typically offers more independence and less intensive medical care.
Paul Willging, the newly appointed president of the Assisted Living Federation of America (ALFA), has another take on the difference between assisted living and nursing homes. He was, until taking his current job, the president of the American Health Care Association, which represents nursing homes in the U.S.
He says it all comes down to "customer focus."
"Nursing facilities have had a tendency to look at the government as their customer," he says. That's because Medicare and Medicaid usually pick up a resident's tab.
In his opinion, nursing homes are not able to cater to a resident's individual preferences because they are overregulated by the federal government. These regulations decide when residents take their meals and even how often they bathe. Assisted living, he says, allows residents to make these decisions for themselves: It's a matter of being asked vs. being told.
Of course, nursing home regulations are in place to protect residents' rights and ensure that they aren't neglected. Some are not able to make decisions for themselves -- people with advanced Alzheimer's disease, for example. Nevertheless, "sometimes less care is better than more care," Willging says.
"Nursing home regulations were just a disaster," Schurman says, referring to the Nursing Home Reform Act, passed by Congress in 1987. The goal of the ALW, he says, is to come up with regulations for assisted living that ensure high quality, but are more flexible.
In terms of cost, the difference between nursing-home care and assisted living is "really not all that significant," Willging says.
Jones says that although Medicare and Medicaid often pay for nursing-home care -- whereas assisted living is generally paid for out-of-pocket -- those who would be best served by assisted living may not qualify for government support. They would have to pay for either option.
Another key difference between assisted living and nursing homes is that assisted-living facilities offer a more home-like atmosphere. Willging says that "sounds like a hackneyed phrase, but it's really not."
Jones agrees that assisted-living facilities have done a good job of making things feel homier.
"You -- the family, the child -- know better than anybody what makes mom happy," Willging says.
Have a talk with her about what she would want in an assisted-living arrangement, and then visit several facilities. Don't just let your fingers do the walking: Some real legwork is in order. "Essentially, you want to look at the facility," Willging says.
To begin with, let first impressions guide you. "You want to be comfortable with both the interior and exterior physical environment," Willging says. Also pay attention to the staff's demeanor. Watch how they relate to the residents. Talk to some of the residents, too. You'll be sure to get an honest appraisal of the facility from them.
"Know what you're expecting, and then ask tons of questions," Willging says.
Once you think you're ready to settle on a place, "read the contract carefully," Jones says. All the services, amenities, and rules should be detailed in the contract. You should pay particular attention to the discharge terms. A resident may be forced to leave within a certain period of time if his or her health deteriorates. A facility's brochure may suggest that residents can stay until they die, no matter what, but the contract may state that they must move out if the staff can't meet their needs. If you're not comfortable with the terms, don't accept them.
Compare the terms of the contract with your state regulations, too. It can be hard to find these regulations because various departments of state government regulate assisted living. In Vermont, it's the Department of Aging and Disabilities; in Florida, it's the Agency for Health Care Administration, and so on. You can find contact information for the agencies that handle assisted living regulations in all 50 states and the U.S. territories at https://www.seniorresource.com/states.htm
ALFA has an exhaustive consumer checklist on their Web site (https://www.alfa.org/public/articles/details.cfm?id=75) that may be helpful when visiting a facility. It covers just about everything you would want to know, but may not think to ask during your tour. For example, can mom bring her cherished Edwardian antiques to furnish her rooms, or will she have to settle for the institutional decor? Can her macaw come live with her, or are noisy parrots not allowed?
It's also important to consider how close the facility is to the community where the resident has ties. If mom has been going to the same beauty parlor, the same church, and the same coffee shop for 40 years, she may be unhappy about moving to a facility that's a four-hour drive from those places.
You can use the ALFA online directory to search for assisted living facilities anywhere in the U.S. (https://www.alfa.org/directory).