Beginnings

Tbe term "Diogenes Syndrome" was first used to describe the cluster of behaviors also known as "senior squalor" in 1975, in an article written for the journal Lancet by Clark, Mankikar and Gray. These and other researchers also observe that the syndrome not confined to the elderly; younger people turn up with it too. The literature posits a profile for the Diogenes sufferer: typically aloof, domineering, inflexible, with limited or nonexistent social support.
Of the medical and social service people I've encountered in my own quest to figure this all out, only one, a hospital social worker, was actually familiar with the term Diogenes Syndrome. A clinical psychiatrist, three APS workers, a social worker with the local Council on Aging, a hospital charge nurse and a nursing social worker did not, although they immediately recognized it once they heard the symptoms.

What's This?

What's Diogenes Syndrome? Even if you've never heard the term, you've read about it, heard about it, maybe even encountered it in your neighborhood. Diogenes Syndrome is the elderly man who's found in a filthy house piled high with garbage and old newspapers, the woman with thirty sick and dying cats confiscated by Animal Control, the reclusive old lady at the end of the street who keeps her curtains pinned shut and won't talk to neighbors for fear they'll learn her secrets.

Let me launch this blog by telling you how I learned about Diogenes Syndrome and why I think it's important to make others aware of it too. On Thanksgiving night 2008, my late husband Ken got a call from his sister Carole's neighbors, who said they hadn't seen her for a few days, and would he come and check? When he went over, he found his 70 year old sister sitting on a couch in a dark house with no plumbing, heating, cooling or working phone. She couldn't get up, claiming her leg was injured. She couldn't see out of one eye. Her toilet was plastic garbage bags. The house was filthy, every dish dirty. But she insisted she was fine, was angry at the neighbors for calling, refused any help or intervention.

Ken went home and Googled "elderly person living in filth and squalor" and immediately the term Diogenes Syndrome appeared, describing precisely what he'd seen.
At this point in the story, you'd be thinking that surely something could be done, that no one could be allowed to live that way. But that's not what happened, and it's not what happens in many other cases as well. We called Adult Protective Services, (not once but three times!), the county's ombudsman for the elderly, even the hospital. And we got the same answer every time: she's lucid and competent to make her own decisions and if she refuses help, there's nothing to be done. One worker said, "people have a right to live in filth and squalor if they want to."

Flash forward to now, August 2009: Carole's self neglect led to a severe infection in her foot for which she has been hospitalized twice, had daily nursing care as well as specialized wound care, three rounds of MRSA because of unsanitary living conditions and been placed in a convalescent facility while they try to knock out the MRSA again. My husband died in December 2008. Since then, I've been trying to manage her situation, facing again and again the central conundrum of Diogenes Syndrome: an individual who appears completely lucid and competent to say "no" is living in bizarre circumstances which threaten not just their own health and safety, but that of others -- and because of that right to say no, the medical and social services are unable to intervene.

This journey of mine, taken up unwillingly, has led me to create this blog, and to write a book about Diogenes Syndrome (Lucid on Demand: Recognizing Diogenes Syndrome). I hope it'll help people to recognize this mystifying cluster of behaviors and to find some support and information in their own efforts to help those who don't want help.