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Locked and Loaded for Dignity Deserved but Withheld

| September 27, 2009

There was the case of Milissa Holland, the Flagler County commissioner, who in June accused 81-year-old John Petyo of Palm Coast of making death threats. Petyo has a recent history of trespassing and mental-health issues. There was the case of 82-year-old Antonino Milian of Deltona, who in August was found dead in the woods of Flagler County, not far from his Jeep Cherokee, at least five days after wandering off from home. And there was the case of William Kepler, 91 at the time and a resident of an assisted living facility in DeLand, who, two years ago this week, was arrested for pointing a loaded gun at a caregiver who wouldn’t let him go for a walk.

What all three cases have in common isn’t just advanced age or its ravages on judgment, but the persistence of character, the desire to stay alive on one’s own terms, even if it means dictating terms along the way. Even if it means risking fatal consequences (and no longer having a grasp on the risks, as is so often the case with people with dementia). What the cases also have in common is a community – and a society – unprepared to deal with them. That’s not reassuring in a country with an epidemic of dementia. Some 5 million people have a form of Alzheimer’s today. A projected 7 million will by 2030, or 2 percent of the population.

Most aren’t in nursing homes or assisted living facilities. They’re cared for by a spouse or by family, or live on their own, as was the case with Milian. Home health and on-call services are numerous – if you can afford them. Most people can’t, or insist on remaining independent regardless, figuring that should trouble befall them there’ll always be help. Sometimes there is. Good people aren’t extinct. Often, there isn’t. Milian died alone and out of sight. And what goes for “help” can be a clash between the normal but disturbing unraveling of age and the far more disturbing response by those who have no clue what to do when confronted with it.

Petyo and Kepler were charged as criminals. DeLand cops wrestled Kepler to the ground, slapped him with charges like your average hoodlum and had him imprisoned (as he was imprisoned in his assisted living facility) before a good Samaritan bailed him out, and prosecutors three months later had the good sense to drop the charges. I’m not downplaying the fear and risks their victims endured. But dealing with older people with dementia issues no differently than with people in control of their faculties is itself demented. Cops and the judicial system have a poor track record of dealing with individuals with mental-health problems, let alone people with dementia. But you can’t blame them when mental-health budgets are the grudging leper colonies of state and local governments.

Existing institutions designed to care for people with dementia don’t do much better. Assisted living facilities can be fine places for people who don’t want the burden of maintaining a house but are still in control of their life – if they can afford the luxury. Medicare doesn’t cover any of it. At $3,000 to $5,000 a month, most people can’t pay. For those with dementia whose families can, and who don’t get lucky finding that rare treasure of a home, it’s a dark world of locks, forced routine, harried, hectoring and often absent help. Inspections are too rare and cursory (those leper-colony state budgets again), the caring a crapshoot. That, too, is not a surprise: Certified nurse assistants, who do all the grunt work and more, are paid around $10 an hour, about what child care workers are paid. That’s less than a living wage. (Shareholders pocket the difference; elderly care being a hugely profitable business.) Turnover is dizzying for families with loved ones in those facilities. Imagine what it must be like for residents.

Naturally, no one volunteers to be institutionalized either in a nursing home or an assisted living facility, for entirely understandable reasons. I revile guns and people who use them, but Kepler is a hero in my book. Those places can be murder on a man’s freedom and sense of self, no matter how much their intake administrators reassure families with embroidered rhetoric and bingo nights. Nursing homes are worse. If it were my turn, I’d opt for a death panel first.

All of that is going to have to change, including Medicare’s (and taxpayers’) stinginess, if the country is to put the dignified – not just “humane,” a word borrowed from dog pounds – caring of its elderly where the country’s supposed reverence for individualism is. I’m not holding my breath, because here’s one of the most telling ironies of how the business of caring is done in America: We pay the least those who care for our youngest and oldest. I’d say it shows, but most of us don’t care to look, which suits our caregivers’ shareholders just fine.

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