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People ask me, "How do I pick out a home for mom?"
I say, "You don't pick the home, the home picks you."
As an itinerant psychologist who travels to a variety of nursing homes, I've probably been in more of these curious institutions than anyone except a state inspector.
You can read all the how-to-find-a-nursing-home books you want. The reality is you fall and break your hip, or come down with pneumonia, and a few days later the hospital social worker is calling around to find an available nursing home bed. Nobody is saying you have to take the available bed, but Medicare won't pay for the hospital after it's no longer medically necessary. They're telling you it's time for rehab at a nursing home, and we'll pay for that. There is no nursing home tour for old people equivalent to the high school junior's college tour. I've rarely noticed a family kicking the tires in a nursing home, wondering if this will be a good place for Mom.
My father, on his slide into severe dementia, was in a pretty good setup. He had a studio apartment with a view of the harbor, three squares a day, and someone coming in to dole out the meds, and clean up the place. During the day, he attended a day program just like my three-year-old son (in only one of the many ways in which old age is running the childhood film backwards through the projector).
Everything was on cruise control. My family could even take a vacation hundreds of miles away, and not worry about the care of Dad.
But one day he fell off the steps of the van, which transported him to the day program, and he broke his hip.
After a week in the hospital, they're ready to discharge him to a nursing home for rehab. We don't give it much thought. His day program, which we're content with, is connected to a nursing home. They have a bed available, so that's fine. We think it's temporary, so it doesn't matter where he is since he'll get back to his room with a view-eventually. How bad could it be? Anybody can stand anything as long as you know there an end to it. That's the whole idea of Purgatory.
But Plan A doesn't always happen. As it was with my dad and millions of other dads and moms, you're in the nursing home for rehab and they get worried it wouldn't be a good idea for you to go back home, after all. They're concerned about your "safety awareness," or your medical needs are too great for homecare, or, dazed and confused, you might go wandering off into the night.
Of course you could pay for 24/7 personal companionship, and stay at home, but multiply 24 hours by $25 per hour by 365 and, the result, $219,000, is three times what it costs out of pocket for the typical nursing home, which isn't cheap either, and beyond the means of most. But if you can't afford the $70,000 annually for the typical nursing home, at least you can impoverish yourself-euphemism: "spend down"-go on welfare and have Medicaid/Title 19 pick up the tab. (That may also be ending for you if you're under 55 and the Republicans get their way to cut billions and billions out of Medicaid. In my spare time, I've been reading Dickens and those Victorian poor houses? Not a pretty picture.)
But is there anything you can do not to wind up in a snake pit? As Yogi Berra said, "If you don't know where you're going, chances are you will end up somewhere else." When your dad is in the hospital and the social worker is making noises about finding a nursing home, you might have a day or two to rush around and check them out.
The first Rosofsky rule of checking them out is not to be faked out by the chandelier. It's easy to hang a chandelier in the lobby over the leather couches. But the bottom line for Mom is how long it takes them to clean her bottom. If there are more bottom cleaners per resident in Agincourt Rehabilitation than in Crecy Acres, Mom's bottom will be spiffier sooner, chandelier or not. But finding a home with more bottom cleaners can be a problem. No matter how bright the chandelier, a nursing home has only to adhere to a minimum standard. They asked an astronaut if he ever gets scared on the launch pad waiting for liftoff. He replied, "No more scared than anyone would be sitting on a billion parts all built by the lowest bidder."
Nursing homes operate in a system of quasi-socialized medicine. Everything is pretty much paid for by Medicare (rehab stays of less than one hundred days) and Medicaid (long-term stays after you have impoverished yourself). In the end, the government pays the piper-Mom's bottom cleaner-and calls the tune. In 1987, following loads of bad press-unsanitary conditions, abuse, and neglect-the Feds set national minimum standards for nursing homes. The states, which administer these standards on a local level, can choose to exceed the minimum. Per the usual, there is a higher level of state funding in, say, Connecticut than Mississippi. But within the states of Mississippi and Connecticut there is a set level of funding per resident and a mandated number of bottom cleaners per resident. So it doesn't really matter whether you're in New Canaan, Connecticut-the richest town in the United States-or 20 miles away in inner city Bridgeport, Connecticut-one of the poorest-in terms of bottom cleaners per resident. A survey by the Kaiser Foundation concluded that the national median staff minutes per resident day is two hours, twenty minutes. The Medicaid administration itself says that two hours, forty minutes is the minimum level to avoid serious harm to Mom's bottom. But that is the minimum. The preferred standard is three hours. And for Mom's bottom to be fresh as a baby's, the optimum is four hours per day. No state exceeds the optimal standard. Only two states, California and Delaware, surpass the preferred standard. In Virginia and Alabama, Mom's bottom gets only eight minutes of attention each day.
I remember walking into a beautiful facility-sylvan setting, carpeting, airy public spaces, large rooms-and overhearing the nurses talking about how they didn't have enough staff available for the upcoming shift. "Maybe we can ask Carmela or Anna, if they want to work a double shift." And I remember a scruffy-looking place on a mean city street with dark hallways and small rooms, thinking, "I wouldn't like to wind up here," but changing my mind when I witnessed a superior quality of care.
Nursing homes can be Potemkin Villages with pretty facades-leather couches and chandeliers-but with not enough substance to distinguish one from the other where it counts, Mom's bottom. They're all working off the same playbook-the same proportion of staff to residents. So even the Rosofsky rule of not being faked out by the chandelier is largely irrelevant, since the human resources only have to meet the minimum standards.
There is, so to speak, a race to the bottom.
The art of euphemism is in support of the Potemkin facade. I picked a random state, Minnesota, to illustrate a point about naming. First, you notice that nursing homes aren't called nursing homes. In Minnesota, there is the Bethany Good Samaritan Village, the Golden Living Community, Whispering Pines, and Marshall Manor-names that could easily apply to affluent gated communities. Occasionally, they're health centers, as in the Richfield Health Center. There is the odd establishment that will call itself what it is, a nursing home, but it makes sure to lighten the mood with a name like Pleasant Manor Nursing Home. This reminds me of Century Village, the Florida retirement community in which my Dad lived before his assisted living facility closer to me. From the street and apartment block names, you would never haven known it was a community that was mostly Jewish with a dash of Italians. My father lived on Sheffield. Nearby, there's Elgin, Northampton, Devon, and Kent. A confused Jew or Italian might think they could wander off to the Lake Country for the weekend.
I often wonder why they bother with the cosmetic facades and the euphemisms when they're all the same under the skin. All striving for the minimum standard. But, ineffably, or maybe it's chaos theory, there seem to be differences. Follow your nose. If it smells bad, it probably is bad. Poop or vomit doesn't smell as bad when it's fresh. Check the nursing station. If you see teetering piles of forms and documents, or if it looks like your teenage daughter's room, the staff is too harried or disorganized to keep up.
I can put in a small brief for religion here. God motivates some of the people to do good work some of the time. Although many religiously founded homes are selling out to corporations, if you see a nun walking around, it might be a good thing. God aside, noblesse oblige among the ladies who lunch also yields good works. The Mary Wade Home, reputed to be the best nursing home in my community, evolved from a nineteenth-century charity home started by Eli Whitney's daughter-in-law for "young, homeless girls" to an instituttion for their frail elderly great-great-grandchildren.
But, unfortunately, most of the nonprofit nursing homes, whether organized by the Mother Theresas or the Lady Bountifuls of the world, are selling out to the faceless corporations, some of which then go bankrupt and put mom on the street.
We were looking for an exit from Dad's Jewish run nursing home, which goes to show that religion is not a perfectly reliable guide. His venerable institution, founded in 1914-within my father's life span-is a National Historic Landmark. It recently went bankrupt and shut its doors, too.
When by dad was still alive, and the home was still in operation, it was a constant struggle to get them to follow their own care plans. He was supposed to have two, daily assisted walks-an aide on each arm, Dad hobbling down the hallway. But they never seemed to happen. Either they didn't have the staff on hand or Dad would command them to "Get the hell out of here!" And they listened to that.
"He says that to everyone," I'd respond.
"We have to respect his rights."
I'd get the "respect his rights" remark when I asked why he didn't go to the sing-along. Dad liked to sing along.
I'm a rabid supporter of patient rights. But exasperated at his inactivity I would implore them, "He's in a wheelchair. Just wheel him over."
"We can't do that. He has rights."
They were also supposed to walk him over to the bathroom. It was easier for their understaffed selves to put him in diapers. The lesson? If it's easier to leave Dad in diapers, take this path of least resistance-not just at Dad's home, but most places. I, like most parents, find it easier to yell up to my boisterous kid, "Shut up, already!" than to get off my butt and go upstairs and be up close and personal. It was also easier-and assuaged my own guilt-to complain to the staff than to assist Dad on his walks and wheel him over to the sing-along myself. With two elderly parents, three kids, two fish, and a dog, my wife and I were understaffed too.
As understaffed as the staff was, they had the manpower to wage a bitter strike. It's not a good sign when the bottom cleaners risk their meager livelihood to demand more money and better conditions. During the strike, the administration argued that low wages are a good thing, issuing press releases saying higher wages would downgrade the service.
The philosopher Hannah Arendt looked at ordinary Adolph Eichmann and called the face of evil banal. The nursing home isn't evil. There's no banality of evil. It's simply banal-the banality of banality.
In this highly regulated industry, there's a staffing standard that consumers feel is too low and proprietors feel is too high. There is no incentive to do more than the minimum. In for-profits, the surplus goes into the pockets of the owners. In the shrinking nonprofits, surpluses are theoretically plowed back into the enterprise. This has to be part of the explanation why socialized medicine spends less and gets more.
After we became unhappy with Dad's nursing home, we put him on the waiting lists for seemingly better nursing homes. Dad died on the waiting lists. Three years after he died, I hear from the Mary Wade Home asking me if we still want him on the waiting list. I tell them the wait will be forever.
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My book, Nasty, Brutish, and Long: Adventures In Eldercare (Avery/Penguin, 2009), was a Finalist for the 2010 Connecticut Book Award. Click here to read the first chapter It provides a unique, insider's perspective on aging in America. It is an account of my work as a psychologist in nursing homes, the story of caregiving to my frail, elderly parents--all to the accompaniment of ruminations on my own mortality. Thomas Lynch, author of The Undertaking, calls it "A book for policy makers, caregivers, the halt and lame, the upright and unemcumbered: anyone who ever intends to get old."
