Thursday, June 4, 2015

Your crime: dementia. Your sentence: solitary confinement

Don't feel bad. He doesn't even know he exists.
    Do you ever envision yourself as old and alone? Can you imagine that you -- that active, attractive, sociable you -- might someday essentially be a prisoner in an institution that runs your life? And that nobody will care -- you will be forgotten?
    Maybe your memory and your volition will have deteriorated, but you will still be you. No one seems to realize that. Each day at the nursing home, you get washed off, spoon fed, strapped into a wheelchair, and abandoned in your room. Deeper and deeper you sink, into inconsequentiality.
    You grow pale and gaunt. Your eyes are increasingly haunted. You will be here until you die. Someone needs to be shouting: "WAIT A MINUTE ! THERE'S A PERSON HERE!"

    I feel quite sure that the old people slumped in nursing-home "cells," lit only by a TV, didn't expect that it would come to this.
    I bet they assumed they would grow old gracefully, in their homes, with family and friends for enjoyment and support. They probably pictured music and sunshine, houseplants and home-cooked meals, their pets, their own bathroom and their own bed. They dreamed that their favorite things, accumulated over a lifetime, would surround them, even as the infirmities of age descended.
    Don't we all?
    THIS IS MY POSITION: The status quo is not acceptable. Everything possible must be done to enable people to remain in their homes, as long as they are safe and content there. We must stop dumping our cognitively impaired fellow human beings into institutions that warehouse them for profit. We must demand that facilities which accept dementia patients employ staff who are trained to comfort, engage, enhance and expand these residents' lives. We must also demand that patient advocates be employed to ensure the competent and humane treatment of all nursing home patients who, for whatever reason (for many, it's fear of retaliation), can't fend for themselves. These advocates should not be paid by or answerable to the nursing home. They should be independent and derive their income from a pool of funds that would be included in the licensing fees the institutions pay. Believe me, they can afford it.
    The vast majority of Americans strongly prefer "aging in place" -- remaining in their homes, even if they develop physical or cognitive disabilities. With varying degrees of help, that would be possible in many if not most cases.
    But it's not working out that way, and you can probably guess why.

     It's POLITICS. Oh yeah, and MONEY.
    It would cost the government far less to help us remain at home or, if necessary, to move into a facility that is dedicated to providing the best, most comfortable, most stimulating and most understanding care possible for those with dementia. But neither of these options is covered.
    What is covered by our "Dear Leaders" in Washington is the NURSING HOME GULAG.
    You can't age in place, because the system that would help to fund that humane approach is corrupt. Hot-shot lobbyists have ensured that billions of dollars go into nursing-home coffers every year, rather than helping you live with as much freedom, comfort and autonomy as possible. As a result, nursing homes have become so profitable that they are being rapidly bought up by speculators, who amass chains of homes and heartlessly slash staffs (often by half) to increase income. They have evolved from healthcare facilities into commodities.
    The Wall Street dudes have noticed this delicious potential for easy money.
    Because these chains have become so hugely profitable -- at the expense of neglected patients and facility maintenance --  they are being gobbled up by large private investment groups, according to the New York Times -- investment groups that don't give a damn about old people or health care. They acquire all kinds of businesses, and all they care about is the bottom line.
     For example, National Healthcare Corp., which has amassed dozens of nursing home chains, reported an 80 percent increase in profit in one year, a 2010 article in Business Week reported. 
     In New York alone, profits exceed a billion dollars a year, the Attorney General's office has disclosed.
    The rather hapless state and local agencies that are supposed to protect residents'  rights and monitor their care are underfunded and overwhelmed. Medicare and Medicaid are ineffective, bloated bureaucracies that perversely continue to flood, with our tax dollars, the least attractive and least efficient caregiving model we've got.
    In my state, those whose job it is to protect nursing home patients are an utter failure, and they know it. Every person with whom I spoke said "you're asking all the right questions," and "you raise some challenging arguments," and "you're preaching to the choir."
    But over and over again, their excuse for being unable to fulfill their mandate was, "it's complicated."
    I was told, "It's people like you, with a fire in the belly, who can get the reform we need. Be sure to contact your legislator."
    How ridiculous! Get some fire in your own belly, why don't you? Or give your job to someone who's got it.
    It is our paid officials who are in the best position to design and get funding for adequate programs. We should surely support them in their efforts (just as we should support our relatives and friends who are huddled in the cornes of nursing-home rooms, their heads in their hands).
    The state-mandated Office of Public Guardianship "serves as guardian and/ or conservator when a vulnerable adult who has no other person able and willing to do so and that we have petitioned the court and been granted that authority by a court order," according to the administrator. The "difficult part" is that the agency can only afford to serve 225 people in the state.
    When I asked how many thousands of people in the state have no protector, no guardian, no friend or family member who watches out for them and makes certain they are being treated properly in nursing homes, nobody knew. The Commission on Aging had planned to find out, but never did. It was "complicated," and, "We have no funding to address broad questions such as these."
    It is accurate, the administrator added,  "to say that our current system does not have the resources to serve all the vulnerable incapacitated adults in our state."   
    Why can't nursing homes be required to provide a list each month of the residents who have no guardian or protector? No one in the bureaucracy was inclined to provide an answer. It seems so simple. It is not an onerous requirement. It's the least we can do: To maintain a database of people whose welfare is not currently being monitored. 
    For the time being, these are the Forgotten People.
    Think how easy it would be to become one of those.
    Certainly it's true of all of our social-service programs that the needs of many people can't be met, but at least those people (most of them, anyway) have some capacity to fend for themselves. 
    One official assured me, "Facilities are required to report abuse or neglect of a patient."
    That sounds like an extraordinarily naive assumption.
   Each county in the nation has an Ombudsman for Long-Term Care, but they are clearly unable to meet the need. In my county, for example, there are three staff members who purportedly cover 90 institutions and 5,000 patients. They spend most of their time "putting out fires," the program manager says. 
    He also says that his office "advocates for what the residents want," but of course the most vulnerable patients can't verbalize what they "want," even if they could find a phone book, locate the appropriate agency and summon the courage to make the call. It can't be done. We need a proactive approach for protecting those with cognitive impairment.
    But we need to stop placing all the blame on the system for the gulags in which millions of our parents, grandparents, friends and neighbors are confined, and take a look at ourselves.
    As I roamed the halls of the nursing home, what I saw was helplessness, hopelessness and loneliness. Where were their loved ones?
    "Once they get put in there, their families pretty much disappear," a county official told me.
    When I worked in prison reform, I was distressed that hundreds of thousands of people are shut away, out of sight and mind, and we all go on our merry ways without giving a thought to the injustice, anguish and violence these offenders endure.
    At least it can plausibly be said that most of them must bear part of the blame for their circumstance.
    But what did all those desolate people in nursing homes do to deserve their nightmarish fate?

Coming soon: I was told they were "brain dead," that they "have nothing upstairs," that they "don't know what they want," and that they "can't talk." In my interactions with Alzheimer's patients at a nursing home, I found all of this to be patently false. These people need to be saved from the dismal existence to which they've been relegated. For the time being, they are The Living Dead.