The More Things Change

It's been a while since I posted here. My former sister in law has returned home from rehab with her wound pronounced healed. Now that she's mobile in a wheelchair, she's created even more of a Diogenes Syndrome "nest" in her bedroom and also in the house, with paper everywhere and silverware and dishes hidden in cabinets and under towels. I've been trying to keep things clean. But now the location of things and their provenance leads to a bitter argument at nearly every turn, as she suspects me of moving things or otherwise handling them. I begin to see first hand some of the secondary traits of Diogenes syndrome -- lack of self-reflection and a tendency to either escalate the trivial to insane proportions, or to drastically minimize the truly serious.
I got a wonderful email the other day from a man who described a pretty classic Diogenes pattern in the life of his parents. He thanked me for this blog and said that it was helpful to know that there's a name for what's happening with them. It's nice to know that you've made even a bit of difference -- and that for a moment,at least, he might feel a bit less alone.

Why Buy This Book?

The proposal for my book, tentatively titled Lucid on Demand: Recognizing Diogenes Syndrome continues to evolve, now that I've begun collecting stories from others. Those stories (and my own, of course) form the backbone of the book, interwoven with the clinical information and interviews with various people involved with the care of Diogenes sufferers -- doctors, caregivers, and crisis workers. The book will focus on ways to recognize the syndrome so that help and/or intervention can happen before the situation becomes critical. The book will also tackle the central conundrum of Diogenes -- how to help someone who refuses help, when self-neglect becomes life-threatening and social services are powerless to step in. It's clear that Diogenes Syndrome is not at all rare, and so many lives are touched by it.

Shared Experience

I've been browsing the Net for more information for the book. I came across a couple of websites with articles on Diogenes Syndrome -- but also a wealth of posts by people in situations very similar to mine: they're living with, related to or acquainted with someone who exhibits Diogenes symptoms. In nearly all the posts, the frustration comes through very clearly. One writer asked, "is there any help out there?" I couldn't resist posting back, "not much." Some posters advised helping the sufferer clean up the house. The only problem is, it's a temporary fix.

I also found a painting called The Diogenes Syndrome by George Adamson, a British painter who captured very clearly the look of Diogenes Syndrome. Makes me feel inclined to post up my pix of Carole's room.

The Price We Pay

Recent events in my situation remind me that Diogenes Syndrome costs a lot. A person who's discovered in a state of self-neglect may have health problems ranging from the minor to the severe. They end up either in the mental health or the medical system, where they're evaluated, treated (often at taxpayer expense) and, because they're lucid and considered competent, sent back home where the cycle begins again. And again. Social services are helpless when an individual presents as competent -- even if their behavior says otherwise.
I had a conversation the other day with the social worker at the rehab center where my ex-sister-in-law is recovering from her third bout with MRSA. She told me frankly that in cases like this, where an individual appears competent and able to make their own decisions (even bad ones), the only option is to "allow her to fail" -- to come to crisis as a result of her own actions or lack thereof: the only scenario in which anybody can intervene.
We tend to believe (maybe because we want to believe) that individuals will act in their own best interest. If you get hungry enough, you'll eat your peas, as it were. But what's so hard to understand about Diogenes Syndrome is that this is not always the case. These individuals will ignore basic needs, let severe health problems go untreated, all the while insisting that everything is fine and demanding to be left alone. And so, leaving someone to the consequences of their own (bad) decisions is a tricky proposition that ultimately puts them back into the care of a system that is powerless to do anything more than treat the presenting symptom and release them to the same situation. It's this cycle that sets up the sufferer for more suffering and the community for more expenses from repeated care.

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.