Interview with Dr. Fugen Neziroglu, Author of COH Self-Help Book

Fugen Neziroglu, Ph.D., ABBP, ABPP
(Image courtesy of Dr. Neziroglu.)

Many readers of this blog are likely to recognize Fugen Neziroglu, Ph.D. from her appearances on TLC's Hoarding: Buried Alive. Dr. Neziroglu is the co-author of the first self-help book aimed at children of hoarders, Children of Hoarders: How to Minimize Conflict, Reduce the Clutter, and Improve Your Relationship. According to the publisher, the book "explores strategies for communicating with hoarder parents and outlines practical intervention skills. In addition, the book shows readers how to let go of the personal shame and guilt associated with being the child of a hoarder."

I've read the book, and I think it's a good start for discussing ways that children of hoarders (COH) might cope with their situations. While focused primarily on COH who are seeking to maintain relationships with their parent(s) who hoard, the book acknowledges that engaging with a severe hoarder can be an extremely difficult challenge, both for professionals and COH alike. Importantly, the authors are respectful towards COH who have made the difficult decision to reduce or to eliminate contact with their parents. I hope to post a review here in the coming weeks.

Children of Hoarders, Inc. recently spoke with Dr. Neziroglu about her new book and her experiences working with hoarders and with COH. For more information about the book and to read the COH interview with Dr. Neziroglu, please visit the links below:

• Self-Help Book for Children of Hoarders
• Interview with Dr. Fugen Neziroglu (Part 1)
• Interview with Dr. Fugen Neziroglu (Part 2)

Talking Points for Children of Hoarders

Sidney Patrick (as drawn by Jim Smith)

Preface: This post has been sitting in my Drafts folder for a painfully long time. Its roots lie in a conversation I had with Sidney Patrick last October, just before her appearance on HuffPost Live to discuss "Hoarding's Harsh Reality". Although she wasn't a child of a hoarder, she was very familiar with COH experiences, and she had become an incredible advocate for the COH community.

Many COH believe that the needs and experiences of the families of hoarders are inadequately recognized by professionals (a topic for another day). Sidney wanted to convey that perspective in her HuffPost Live appearance, especially since one of the other guests was Professor Randy O. Frost, arguably the most influential academic in the field of hoarding. At Sidney's request, I tried to identify a few key points that she might raise during the segment. The points are included below.

Sid did a spectacular job on the show. Tragically, she passed away at far too young of an age just a few weeks later. She is profoundly missed.

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Talking Points for Children of Hoarders

As general awareness of hoarders and hoarding increases, the impact of hoarding on individuals beyond the hoarder is slowly becoming recognized.

For several years, children of hoarders (COH) have been comparing notes and sharing perspectives in a range of forums and formats, and a few recurring themes seem particularly important, at least in my opinion. I've tried to collect a few of these themes below. Perhaps they might serve as useful "talking points" for children of hoarders who find themselves being interviewed by media or who simply want to convey to friends and associates the seriousness of hoarding's impact on families.

Please feel free to use them, to critique them, or to add to them as you see fit. (If you have additional thoughts about these points, I'd love for you to share your feedback in the comments section at the end of the post. These points already have been improved immeasurably by the input of members of the Children of Hoarders Yahoo! Group.)

COH Talking Points

1. Many children of hoarders grow up under conditions of serious neglect, isolation, and abuse.
2. The impact of growing up in a hoarding environment can last for years—even decades—after a COH moves out of the childhood home.
3. While hoarding appears most dramatically to be about "stuff", to a child of a hoarder, it's really about relationships, family dynamics, shame, and self-worth: many children of hoarders have been conditioned—consciously or otherwise—to believe that they are less important than things.
4. As victims of serious, long term neglect or other types of abuse, many COH will require—and benefit from—equally serious support and counseling. Their needs are as important as the needs of the hoarders.
5. Children of hoarders seeking support should visit ChildrenOfHoarders.com for more information, and healthcare professionals should read Dr. Suzanne Chabaud's article in Psychiatric Times, "The Hidden Lives of Children of Hoarders".

As a final thought, children of hoarders sometimes are portrayed as being inappropriately angry, impatient, or otherwise unsupportive of family members who are undergoing treatment for hoarding. Professionals, in particular, are reminded that many children of hoarders have suffered a lifetime of neglect and abuse and are desperately in need of support. In such cases, expecting COHs to be patient and respectful participants in the treatment of hoarders may be likened to expecting victims of sexual abuse to help their abusers to get treatment, without acknowledging the damage done to the victims, much less getting treatment and support for them.

In memory of Sidney Patrick.

COH Brochure

There is a house in my neighborhood that is an obvious hoard house.

Now and then, I see a girl, probably around thirteen years old, riding a Razor® scooter up and down the driveway, over and over. I've never seen her ride it on the sidewalk or in the street. She always has such a forlorn look on her face.

I haven't stopped to say hello to her (cue visions of breathless reports on the evening news about a 40-something year old stranger approaching a 13 year old girl in her driveway), but every time I see her, I want to tell her that she isn't alone and that things can get better.

I think I'm going to print out a Children Of Hoarders, Inc. flyer (downloadable as a 470 kB PDF file) and put it in the family's mailbox. Better yet, I should just print up a few to carry in my car, and when I see a kid in such a situation, I shouldn't be afraid to get out of the car, hand a flyer to the kid, and tell them that they are not alone.

Then again, the flyer is written more for an adult than for a teenager. Thoughts?

Click on image to download 470 kB PDF version of COH flyer.

Family Intervention Follow-Up

My last post, "A Family Intervention?", centered on a request for advice from a man who is the father of several children and who is married to a hoarder. "Jim" wanted advice on how/whether to have an intervention to help the family, what might happen if it failed, and, in the last resort, how likely he would be to get custody of the kids in the event of a separation.

Before I posted his story on my blog, I outlined Jim's situation in general terms to the participants of the COH Chat held on Sunday, September 9, 2012. I've summarized the resulting comments from that chat session here:

• First, there was wide agreement that Jim should start documenting the family's living conditions and his attempts to address the situation immediately, if he hasn't already started to do so. He should be taking pictures of the home, and he should be keeping a diary of his efforts to maintain the home for the children. He should also document his attempts to work with his wife to provide a safe, healthy environment.
• There also was a consensus that if the basic physical necessities were not being delivered, then the children should be removed from the home immediately. For example, if the house is a fire trap, with exits blocked, etc., then the situation must be addressed without delay. Additionally, if the situation has deteriorated to the point where there are chronic problems with plumbing, heating, or electricity, then the children should be removed from the situation immediately. (Note: it was not clear from Jim's emails that physical conditions in the house had gotten quite as bad as that. My sense was that they hadn't reached that point yet, but that they were on their way.)
• Whether or not there is an intervention, and whether or not Jim leaves (with or without the kids), most people believed that getting counseling for the kids would be important.
• Several people recommended having a family discussion, or at least discussing their home lives with the kids. Chat participants mentioned their own confusion when they were children about living in a hoard house and how those feelings of confusion and isolation impacted their development. Of course, if Jim speaks with the kids, it is hard to imagine doing it without his wife being involved somehow, so it is probably best to do it as a group or with a trained counselor to guide things along. One idea was to have members of the family judge where rooms in the house might fit into the International OCD Foundation's Clutter Image Rating (PDF file).
• Regarding custody of the children in the event of a separation, the chat participants thought it would be very unlikely that the hoarding parent would get full custody, unless the non-hoarding parent had some serious personal issue that he didn't disclose. The consensus was that the non-hoarding parent would get at least shared custody, if not full custody. As one person put it, "Better that the kids live at least part time in a normal home [than in the current hoarding environment]." Another chimed in with, "I would think any sort of stability in dad's home would be better than living with hoarder mom 100% of the time."
• At the same time, courts do solicit the opinions of the children in custody cases, and it is hard to predict the results of that process. Thinking back to when I was a kid, I desperately wanted a different situation, but I wouldn't have wanted to "abandon" my mom (the hoarder). In retrospect, I know that it would have been far better for me to have been removed from the hoard house, but "younger me" would have wanted to stay to try to fix things, at least in part because mom was such a disaster, and dad seemed to be able to take care of himself. In other words, as a kid, I thought that the slim chance that I could help mom was greater than the damage she was inflicting on me. I was mistaken, but I'm not sure I could have been convinced otherwise when I was a kid. Who knows how that would have played out if I were questioned about it in court? Bottom line: without dad in the house to shield us, mom's problem would have been 100x worse, and I shudder to imagine being a teenager in my mom's hoard without dad in the picture.
• Another comment from a chat participant: "It is not just her living there, there are SEVERAL other people in the house. I think that is why they need to act. Even if makes no impact with her, it makes impact with them." 
• Finally, although I said in my original post that a parent's first obligation is to his/her children (and I absolutely stand by that advice!), that doesn't mean that the father should ignore his own needs for a clean, safe, healthy environment. As one of the participants said, "It's not healthy for the dad to keep living with mom and sacrifice all his happiness, too!" Yes, very true. I have often wondered about the kind of life my dad might have led outside of the hoard. He was a terrific fellow, and he died too young to find out, in part, I think, because of the stress of living in the hoard and shielding his kids from the worst of my mom's psychological issues.

Many thanks to the folks in the chat who shared their thoughtful advice!

A Family Intervention?

I've recently been trading some emails with a fellow who is the father of several kids and is the husband of a hoarder. Jim (not his real name) is looking for advice on how/whether to have an "intervention" to help the family. He also wants to understand what might happen if the intervention fails.

I've included an edited version of our conversation below. If you'd like to offer some advice to Jim, please do so in the comment section. Alternately, please send it to me via email, and I'll relay your advice to him.

"I'm in my 40s, married almost twenty years to a hoarder, and we have several pre-teen kids. I've only just begun to understand this disorder.

I've thought of joining the Children of Hoarders support group, but the site says it's only for the kids. The Friends of Hoarders group is mainly for folks who know some hoarder down the street, but not really for the people living with them. Sorry to dump on you, but I found your blog, and I'd love some help. 

I've kept our house livable mainly because of the simple fact that I have a good job, so it is a big house. I'm starting to lose the battle, though. For most of our marriage the hoarding was less severe, but over the past year, it has been accelerating, and I can't keep up with the mess anymore. The closets are full, and so is the garage. I love my wife, but now her hoarding is starting to affect the kids. Or maybe it has affected them all along, and I haven't been paying attention to the right things. 

1. I've managed to keep the downstairs of our house pretty decent...Not great, but livable. The upstairs, where the bedrooms are, is a no man's land, though. The beds are accessible, but you are basically walking on clothes for the rest. We rarely have guests, because we are embarrassed by the mess. I'm afraid that this is stunting the kids socially. Is that what others experienced, or did they manage to come through?
2. My oldest kids (almost teenagers) are both struggling in school with things like finishing assignments and organization. I think it is related.
3. I really do love my wife, and I'm sure that she loves the kids. I'm just not sure whether she loves us enough to give up the stuff.
4. I'm working with my pastor, and we are planning an intervention. He has done several with alcoholics, but neither of us have done one with a hoarder. Any suggestions would be appreciated. Has anyone done this? How did it go? What lessons were learned?
5. Lastly, if this all fails, and we get nowhere with the intervention, and we have to go to court, does anyone have any idea how likely my wife is to receive full custody of the children? There's no point in separating from her to protect the kiddos if they'll just be stuck with her without me around to buffer things a bit.

How do you know when it's time to give up? If a good lawyer says I'd get custody of the kids, should I separate? I'd love some advice, or even a suggestion of where to go. 

Sorry to get so personal with someone I've never met, but there it is... In a way it's safer, since I don't know your real name and you don't know mine."

Here is some of what I wrote back to Jim:

"I wish that there were an easy answer. The best that I can come up with is the advice that I've given in the past to people in difficult family situations, whether hoarding was involved or not: a parent's first obligation is to his/her children. 

In practical terms, your children need safe, clean places to eat, sleep, study, bathe, etc. Particularly as they get a little older, children also need space that they control; space that is free from someone else's clutter. If you and your spouse are unable to achieve that together, then I think that a separation can definitely make sense, even though it is likely to be painful. 

From the things that people have posted in the Children of Hoarders group, and also from some of the recent research on children of hoarders, growing up in a hoarding environment can affect a child in ways that last well into adulthood. A lot of children of hoarders report serious issues with self-esteem, a feeling of being different (in a bad way) from everyone else, an inability to form close, healthy relationships with others, etc., and a lot of C.O.H. say that they were socially marginalized or bullied in school because of their living conditions. 

While you are considering your options, I do suggest that you keep in mind that changing a hoarder's behavior often takes a long time. For an adult, that might not be a very big deal, but for a child, it can be an enormous problem. Kids quickly go through a lot of stages when they grow up, and going through those stages while feeling very insecure or socially isolated can be devastating. As adults, you and your spouse may not have changed a lot in the last five years, say, but think of the transitions that a kid makes between five and ten years of age, or between ten and fifteen, etc., and then think of the burden posed by passing through those transitions with a feeling that things are more important than themselves, that they need to hide the way they live, that they may be getting bullied, etc. 

You might want to take a look at the Friends and Families of Hoarders and Clutterers group on Yahoo. It's not quite as active as the COH group, but it does seem like it might be a good fit. I'm a member there, and I know a few other COHs are, too. 

There are also monthly online chats at ChildrenOfHoarders.com that you might want to check out. You can participate anonymously, and it could be a great opportunity to ask for advice. 

No matter what, good luck and best wishes!"

If anyone has any other advice to give to Jim, or if you think that my advice is not on target, please share your comments on this post below or feel free to send me an email. Thanks!

Update #1 (September 10, 2012): Before I posted this story on my blog, I outlined Jim's situation in general terms to the participants of the COH Chat held on Sunday, September 9, 2012. I've summarized the resulting comments from that chat session in another blog post, "Family Intervention Follow-Up."

Update #2 (January 13, 2013): Thanks to the anonymous family law attorney for the interesting comment below about steps to take in preparation for an intervention! I've elaborated on it a little bit in a new post.

Update #3 (January 13, 2013): Thank you, "Escaped the Hoard," for your very kind post about my site and for linking to this post!

Awkward Party Questions

Here's the scene: I was at a small party a week or two ago, and everyone was having a great time. Awesome food, a glass of wine or two, in a lovely, lovely home. People were laughing, telling jokes, sharing stories, and maybe even exchanging a little gossip here and there. A perfect Sunday afternoon.

I was having a nice chat with several of my fellow party goers. A couple of other people were engaged in conversation just a few feet away. Without warning, someone in that other conversation - a smart, beautiful, charming woman who had recently published a book - jumped into our conversation. She asked me, with a big smile and loudly enough for all to hear,

"Hey, Joe! You had fleas when you were a kid, right?"

Everyone laughed...

...including me! This was not a horrifying moment of humiliation, but a moment of friendship and bonding. In fact, amidst the laughter, I enthusiastically replied, "That's right! You guys had fleas, too?"

You see, this wasn't just any old party. Everyone there was a child of a hoarder. Every one of them understood.

Rather than being something straight out of a childhood nightmare of exposure and ridicule, this was a moment of shared experience, a moment where survival in the face of abuse and neglect was something to be celebrated.

Instead of feeling like a freak, I knew that I was surrounded by people who had endured the kind of experiences that I had endured as the child of a severe hoarder. Even though these experiences at various times threatened me and others in the room with destruction, somehow, we were all standing there: people who were enjoying themselves, people who were worthy of love, people who had accomplished much in life, people who went on to build happy homes with their spouses and their children, people with interesting and exciting careers...people who, despite some deep, invisible scars, were normal. Maybe even superlative. Maybe that means that I can be okay, too.

If you are a child of a hoarder (COH), I encourage you to connect with other children of hoarders, either online or in person. A great way to get started is to visit the Children of Hoarders website, its Yahoo Group, or its Facebook page. Over the last couple of years, several members of the online community have started meeting face-to-face with other COH, and many have said that meeting other COH in person can be an overwhelmingly positive experience. I agree. It's hard to describe what it feels like to realize that, without knowing it, you've dropped a lifetime of defense mechanisms and are enjoying yourself without worry or reservation. It is remarkable to see other COH also shed the burdens that they have been carrying for so long, even if it's only for a little while.

Before I wrap up this post, however, there was one question at the party that was a little bit awkward for me to answer. The conversation had turned to our parents' choices of professions. While no formal studies have been carried out to substantiate their observation, members of the COH online community have long suspected that an unusually high percentage of parents who hoard work in the helping professions, particularly nursing. Unsurprisingly, several of the party goers remarked that they had a hoarder parent who was a nurse. When I was asked about my mother's profession, I said, "Housewife," since that is what she would have said herself. However, "Housewife" didn't really sound right, for any number of reasons, so then I started to say, "Homemaker." That was even worse. Frankly, our house was anything but a home. Mom probably was more of a "homewrecker," and I felt like most of the people in the room knew enough of my story to realize it. Awkward. Indeed, the only awkward moment of the afternoon. (I emphasize the awkwardness was entirely from me examining how my mom defined herself. My friends could not have been more supportive.)

Strange, isn't it? At a regular, non-COH party, I would have had the exact opposite reactions to the question about the fleas and the question about mom's profession. I would have answered, "Housewife," without a concern or a second thought. On the other hand, I would have been mortified if I had been asked about fleas. Eventually, I'm sure that I will be confident enough to answer either question in the same way, forthrightly, under any circumstance. Not yet, but someday. Someday soon. The work continues.

PS. For those of you who haven't guessed, the "smart, beautiful, charming woman who had recently published a book" is none other than Barbara Allen, author of Nice Children Stolen From Car, available in paperback or Kindle format at Amazon. For a quick preview of her excellent writing, check out an excerpt from her book over on her blog. Yes, the excerpt is about fleas.

Hello, Edinburgh!

It has been pretty exciting to watch the number of hoarding-related support groups, task forces, and other resources go from roughly zero to, well, a bunch, over the past few years. Many of them are mentioned at places like the Children of Hoarders Inc. site and at the International Exchange on Hoarding. My own blog has been around since the summer of 2006, and I still get excited whenever I find out that someone likes something I've written, particularly when that someone is an ocean away.

A friend of mine just forwarded to me the March 2012 newsletter (815 KB PDF file) from the Compulsive Hoarding Action Group Edinburgh, a “self-help support group for individuals suffering from compulsive hoarding”, and I was absolutely tickled to learn that someone in that great city mentioned my blog:

“Hoarder’s Son” blog – hoarding from a relative’s perspective
This month we discovered a blog written by Joe, the son of a compulsive hoarder. On his site, Joe shares his personal experiences, as well as providing links to blogs written by other children of compulsive hoarders, and general hoarding information. Readers are welcome to comment on blog posts and offer support and advice to other users. “Hoarder’s Son”, and the other blogs linked provide a poignant first-hand view of life with a compulsive hoarder, and display a profound understanding of a much misunderstood problem. You can find the blog at http://hoardersson.blogspot.com/ .

Thank you for those very kind words!

The CHAnGE website has links to a range of support resources, presentations, videos, etc., and, quite aside from mentioning my blog, their newsletters have lots of good information about the latest hoarding research, interviews with support specialists, etc. You can also find CHAnGE on Facebook and twitter. I encourage all of my readers to have a look!

Note: CHAnGE’s March newsletter is not online yet; I'll share the link when it becomes available.
Update: DONE! http://www.changehoarding.org/change_newsletter_mar_2012.pdf