So it's safe to say I brought a bit of personal history to our "Aging in the Shadows" investigation and the questions we raised about the industry. Questions like: Why no federal regulation? Why are state laws all over the map? Why is there not even a single uniform name for these facilities? Why are they called "Assisted Living" in 41 states, "Homes for the Aged" in Michigan, "Personal Care Homes" in Georgia, "Boarding Homes" in Washington, "Community-Based Residential Facilities" in Wisconsin and "Residential Care Facility for the Elderly" in California?
By definition, "Assisted Living" generally means 24-hour supervised personal care facilities, a place where residents get three meals a day and a range of services from bathing to dressing to laundry. These facilities also provide medication and health management, social services, recreational activities, transportation and housekeeping. For the most part, it's private pay — costing residents an average of $2,000 a month (but as much as $6,000 in some cases).
Nursing homes, by comparison, are for seniors who are sick and need constant medical attention. Unlike assisted living facilities, they require a nursing staff, are federally regulated and accept Medicaid or Medicare.
Despite my mother-in-law's fine experience, I knew little of these differences when I started my reporting, before I traveled to Michigan to interview Dennis Camarata, his wife, Mary, and his sister Trish, as they relived the horrific death of Mike Camarata.
It was Mike Camarata who loaned Dennis and Mary the money to open their first restaurant. A former ironworker, Mike was a tough guy who softened later in life. At the age of 83 and turned almost childlike by dementia, he was living in a Home for the Aged outside Detroit.
"He was very sweet, he was very kind, he thought of me as his girlfriend," said Mary. "He loved to hug."
"It was a complete open plan," said Dennis of the facility in Ann Arbor, Mich., where the family eventually placed his dad. "The kitchen was open. The dining room was open. Pretty much everything was open."
So it was on April 9, 2004, that Mike Camarata was wandering around the kitchen and opened what in his mind he thought was the refrigerator and drank from what he thought was a jug of orange juice. Only it wasn't a refrigerator. It was an unlocked kitchen cabinet. And it wasn't orange juice. It was a toxic dishwashing detergent containing sodium hydroxide … better known as lye.
"We were told by the doctor that this particular chemical was 50 or 100 percent stronger than Drano," said Mary.
"Stronger than Drano?" I said.
"Yes," said Mary.
"Never was in a million years was I ever prepared for what I walked in and saw at the hospital," recalled Trish, tears in her eyes. "He turned around he looked at me: His mouth was all swollen, his face was all swollen, he was trying to cough — and what can I do?"
It took Mike Camarata four terrible days to die.
"It was hard to watch my father pull his stomach and his throat out through his mouth," said Dennis. "It was just horrific. He died a horrific death."
In February of this year, the Camarata family settled a lawsuit against the facility and cleaning supplier, one of more than two dozen negligence cases filed by attorney Jules Olsman.
"A different name for the assisted living business could be risky business," said Olsman. "They market not just to the people who are going to use the services, the senior citizens, but to the children of these people who feel much better saying, 'Oh, my father is in assisted living and not a nursing home.'"
Without question, there are many assisted living facilities across the country in which residents are treated with the kind of tender loving care highlighted in brochures and advertisements. But given the most unscientific sampling of people we spoke to about this story — some of the 78 million Baby Boomers whose parents will eventually need help or, odds are, they themselves one day — there is an appalling lack of knowledge about the assisted living industry in this country.
You might be surprised to know that there are now more than 36,000 assisted living facilities in this country — up 33 percent since 2000. Industry leader Sunrise Senior Living Inc. boasts more than 400 facilities in the United States and Canada alone — and $126 million in earnings in 2005. Given those kind of numbers, I was also surprised to find that assisted living facilities are not subject to any kind of federal regulations — and surprised to discover how widely state laws vary from state to state.
For example, only about 30 states require first aid and CPR certification; just 24 mandate that a nurse must be on staff. And only one state — Alabama — insists that the medical director must also be a physician.
Paul Williams is the director of public policy for the Assisted Living Federation of America (ALFA). His trade association has steadfastly resisted federal regulation. The main reason, he said, is because it "kills innovation."
In addition, according to Williams and the ALFA, the existing system works because every state gets to determine "its own best way to ensure seniors are protected from abuse and receive optimal care." Moreover, the AFLA says member companies follow strict internal processes to "ensure that each community far exceeds the regulations in the states in which they operate."
"The states have done a great job of devising regulations," said Williams. "By and large across the country, consumers have been very satisfied with the care that's been delivered by our caregivers."
That's really hard to tell because nobody we talked to can get a real handle on how many lawsuits have been filed against facilities — mainly because there's no central database. The sense, however, is they've mirrored the growth of the industry. Some states, like Michigan, have suffered from governors and legislatures who believed the industry was better served by self-government. Under former Republican Gov. John Engler, staff inspectors in Michigan's Department of Human Services dropped from a high of 80 in 2000 for 4,439 facilities to 46 inspectors in 2006 for 4,617 facilities — a ratio of less than 1 inspector per 100 facilities.
In the case of Mike Camarata's senseless death, the facility in question was never fined or sanctioned. The state's only response was a letter asking if "a corrective action plan" had been implemented.
"Pretty sad, isn't it," says Dennis Camarata.
Marianne Udow, the woman in charge of Homes for the Aged in Michigan, is now fighting back, pushing for tougher laws and more inspectors. A stronger Democratic voice in the newly elected state legislature will help Democratic Gov. Jennifer Granholm increase the pressure. So would a stronger public voice.
So what can you do? According to Udow and many other elder-care experts, the No. 1 thing is … your homework. Don't blindly believe brochures and video presentations. Go online to check out the regulations in your state regarding licensing, training and staffing, to see if the facility you're interested in has been cited by the state for violations before making a decision. Don't be afraid to ask how many hours of training are provided for caregivers, and what form that training takes.
And, if at all possible, take an active role in monitoring the care of your loved one. When it comes to "assisted" living, that may well be the greatest assist you can give.
The Alzheimer's Foundation of America has created a program to establish national standards for facilities that care for individuals with Alzheimer's disease or related dementias. For more information, click here.
Correction: This story was updated Nov. 14, 2006, to reflect new information from the state of Minnesota. Minnesota recently implemented laws specific to assisted living that include background checks for all staffers and a nurse on-call at all times; last week the state confirmed to CBS News it had no staff requirements.
By Armen Keteyian