Survey says....

Although there are plenty of books for parents and spouses of people with mental illness, research into growing up with a mentally ill parent has been sadly lacking. Until now, there has been no systematic research whatsoever into the effects of growing up as the child of a hoarder. If you're interested in contributing to the field of knowledge about being raised in a hoarded home, keep reading.

From Dr. Suzanne Chabaud:

Thank you for participating in my research on Adult-Children of Hoarders.  This research is unique in that it taps into so many aspects people’s lives from childhood to future expectations. The conclusions we derive from the completed surveys will guide future research, education, intervention, and outreach for people who grow up in hoarded homes.

Some of you may have participated in the Interview Component of the research. Thank you, again! We are offering for you to participate in this Phase, as well. You are under no obligation.

I know that completing about 200 questions in the survey can be tiring so please take breaks as needed. Do not feel compelled to complete it in one sitting. You may exit the survey and return at a later time. Try your best to answer all of the questions, as I believe that each is valuable. The more completed surveys I receive, the more I can make meaningful conclusions.

It is also important to use the navigation buttons inside of the document; the software only saves information in pages and only when “next” is used to navigate. In order to insure anonymity, we have also programmed the survey to allow exiting and reentering the survey through a web link. Because of this, you will need to use the same computer each time you log back in to continue with your progress. It is best to use IE or Firefox. Chrome has had a couple of compatibility problems.

Thank you, again, for your valuable participation! I hope that you can feel proud for what you are providing. I also hope that your self-examination will be enlightening for you too. If you have questions while you are taking the survey, please feel free to email me. Any technical issues, please email Ms. DuBois at cynthiamdubois@gmail.com. She will happily assist you.

Sincerely,

Dr. Suzanne Chabaud

You can take the survey here.

My worst nightmare

This article about two women whose hoarded home caught fire scared the bejeezus out of me. One of the women, age 60 and not very mobile, was home alone when her house caught fire. In her own words, it's fortunate that she was sitting on the front porch, because "if it had happened while I was in there, I would never have gotten out."

My mother is in her 60s and not very mobile. Over the last few months, she has begun hiring people to help her clear out her house and "get her life in order" (her words, not mine). Since I can remember, she has been working on getting her life in order, by which she means organizing her junk and making her house more presentable. Unfortunately, as with many hoarders, her organizing often takes the form of churning her things from one pile to another. I'm hopeful that having hired some organizers will help her take the next step of actually letting some stuff go. Her house, as far as I know, isn't yet to the point where she would have trouble leaving in case of fire. Hoarding often gets worse as the hoarder gets older, though, so stories like this always strike a nerve.

I recently read another article that I'm going to have to mentally file under "you can laugh or you can cry." This article about firefighters who were unable to fight a fire at a hoarder's home is actually kind of funny, in a twisted way. Or maybe I just think it's funny because it gives me a special kind of glee to picture this happening to my mother's house (when, of course, her not-too-mobile self is far away from it). These firefighters realized they couldn't get inside to fight the flames, so they brought in a backhoe to tear the front of the building off. (I would love to be listening in on the phone call for this insurance claim. "Okay, so you have some fairly extensive fire damage...and pardon me? I thought you just said the firefighters ripped the front of your house off with a backhoe. What? Oh.") So after they tore the front of the house off, stuff started pouring out of the house "like [a] jackpot from a slot machine." Then the first floor of the home collapsed -- but, not to spoil the suspense, it only fell about six inches because all the stuff in the basement kept it from falling any farther. Regardless, to the surprise of no one who is reading this blog, the house had to be condemned.

It's not just the hoarding that hurts

In thinking back over my childhood, I'm just now starting to distinguish between which of my mother's damaging behaviors stemmed from the hoarding and which came from her mood disorder. Growing up, we never talked about what went on with my mother. We never really even talked about the hoarding, unless someone was coming over to visit. Then we didn't talk so much as embark on a marathon cleaning session so no one would know how bad it really was. Piles of things would get shoved into my parents' room and into the garage. Since the doors were kept shut, a lot of the mess was kept hidden from any outsiders who might judge.

It wasn't so simple to hide the fact that my mother struggled with severe depression. She would go for awhile being, in psychological parlance, a "good enough" mother. The dishes might or might not get done, but we'd have some kind of predictability about our days. She'd spend time with us doing fun projects or taking us to museums or other educational places. I was never certain, though, when the other shoe was going to drop -- when she would go from being "good enough" to unable to get out of bed, crying all the time, lashing out at us kids that we made her life "a living hell." Her paranoia that people were telling lies about her, her refusal to let us play outside because the world was filled with dangers and bad people who might hurt us, her jealousy of our having friends outside the house or of loving adults other than her -- those didn't come from hoarding. After this time spent crying in bed or moving slowly around the house under a dark cloud, her behavior would change again. Suddenly, she would be cheerful and full of energy. She'd start several new projects that we kids all knew would never get finished. She never realized that, though, and would stay up all night to work on them, sometimes for several nights in a row. She'd go on spending sprees, buying bags of gifts or clothing for us or for friends. After awhile, she would cycle back down to being our regular mom -- until she got depressed again and the cycle started once more.

I didn't realize until I was in college and going to a therapist that her other behaviors, the hyped-up/talking too fast/shopping spree/up all night phases likely mean that she was struggling with bipolar disorder and not simple depression. Growing up with a mother whose moods and treatment of her children varied so wildly, independent of anything we had done, meant that I grew up with the sense that the world is an unstable and unsafe place. Couple that with the damaging behavior around the hoard -- the things that looked like trash to us were such valuable treasures to her, things that seemed even more important than we were -- meant that growing up, I often questioned my own sanity and view of reality.

Many parents with compulsive hoarding also have another mental illness, whether it is OCD, severe depression, schizophrenia, or something else. It's very common for families not to talk about it, as mine didn't. If we were lucky, at some point someone explained to us children of hoarders that our parents have an illness that is in no way our fault. If we're very lucky, and willing to work through all that we've experienced, we'll be able to realize that the craziness isn't part of us at all. It doesn't need to define us. It isn't who we are.

So yes, I'd say her nerves were bad

It's always fascinated me that we live in a culture that casts so many aspersions on the mentally ill. Blame the Puritans, I guess, as well as any of the Founding Fathers that subscribed to the idea that if you were physically ill, you clearly brought it on yourself by displeasing God. It's not that far of a leap for us to think that the mentally ill are weak, or shiftless, or have done something to bring their misfortune upon themselves.  Pull yourself together! Why can't you just snap out of it?


Or, in our case, we hear others say such things about our parents, if anyone knows about their situation at all. Frances Boudreaux recently published Where the Sun Don't Shine and the Shadows Don't Play. She writes about growing up with her mother, who was a clinically depressed, schizophrenic hoarder. (Just typing that last phrase made my heart ache. Honestly, could it get much worse than that?) 


In an interview, she mentions that "In the 1960s in rural Central Louisiana, you didn't talk about mental health issues. It was OK just to say your nerves were bad, which my mother did." On a larger scale, I think society has moved more toward openness in the past few decades. At least there are conversations happening and funding put toward supporting those struggling with mental illness. On a smaller scale, though, I question how much truly has changed. Hoarding is such a bizarre and misunderstood illness that I very rarely have heard another person begin a conversation about it, even when their lives have been deeply impacted by a hoarder. Yet, when I've mentioned it, I'm almost always surprised by the other person's response. "Oh, my uncle was a hoarder. You should have seen his house!" "My sister..." "My dad..." and so on. There's so much shame and fear of judgment for being related to a hoarder that often, we limit ourselves to saying even less than "her nerves were bad." And so the shame and secrecy continue and we continue to feel alone, even though we truly aren't.  It's enough to make me wonder what would happen if we could be a little bit braver, a little bit more open -- if on a smaller scale, with the people who touch our own lives, we could keep that conversation going.