• Marnie Matthews, MSW, LICSW posted an update in the group Group logo of Open Topic Family Support - Primary Community ForumOpen Topic Family Support 7 months, 2 weeks ago

    Do you recognize the co-occurring mental health disorders such as depression, anxiety, add/adhd, ocd in your family member? If so, how do they impact the hoarding? Do they impact you differently that the hoarding does?

    • YES. I wish I could unpack it better, but I assume you already picked up on that Marnie. I’m finally resettled for this Thursday :). So many coh I talk to seem to be responding to what look like NPD, BPD, histrionic, paranoid, OCPD… It is my suspicion increasingly that hoarding may be compounded, or a susceptibility may be present due to factors like ADD… I’m almost certain that is the case with my mother but so many COh have stories that sound like folks “self-medicating” mental illness with hoarding rather than drugs or alcohol… Marnie, do you have more research on this topic? This is how I would describe the phenomena that I have observed with my mother and heard described by so many coh…

      • In regards to the self-medicating yes, but the hoarding is not the self-medication, an acquiring addiction is. Hoarding disorder is a completely separate issue as excessive acquiring occurs outside of those with hoarding disorder in addition to frequently co-occuring with hoarding disorder. This self-medicating through acquiring is typically rooted in depression and anxiety. The diagnostic criteria of hoarding disorder includes acquiring as a specifier, not as a symptom that that is part of the diagnostic criteria. When combined, the primary feature of hoarding – extreme difficulty or inability to let things go due to significant distress – and excessive acquiring or acquiring addiction, they have a compounding effect. Approximately 40% of individuals with HD have ADD/ADHD. That being said, the processing issues known to be present in those struggling with HD share very similar features of ADD/ADHD. Research is currently being done to determine if ADD/ADHD is truly a co-morbid issue of 40% or is it the features of HD due to the processing issues that are accounting for that piece. While I understand what you are saying about personality disorders, studies have shown that they are not among the co-morbid mental health issues that are prevalent enough to be included in the statistics. It doesn’t mean they don’t, it just means it is not typical. In my experience over the last 8 years and 100s of clients, there were only 2 that met criteria for a PD although many demonstrated features of PDs, it was related to hoarding disorder and the distress levels – which is a feature that is included in the diagnostic criteria. In other words, those features were more defense mechanism than diagnosable PD.

        • This interface is killing me Marnie… I just typed a really long reply and it vanished. i’m Going to send you and email instead

        • I also see the fortress-effect of the hoard functioning as a huge LEAVE ME ALONE, KEEP OUT OR ELSE, just like substance abuse, and the fortress keeps people/experience from causing pain, it has a distancing, numbing , anesthetic effect. Given the rampant alcoholism in my mother’s family, and her vehement determination that she would never be an alcoholic, it appears to me she took the dysfunctional family script and substituted the hoard for booze… not just as it pertains to acquiring, but yes, that too!

        • I get what you are saying about PD. The problem is basically that 100% of our parents never seek treatment for hoarding disorder so these two populations do not overlap. We don’t know the population in treatment and experts don’t know ours… I don’t know anyone from COH Yahoo whose parent was ever treated and Many seem to feel their parents are malignant narcissists… granted many of us are older, parents are dead, and hoarding research is yet nascent…

          I’m not satisfied by anecdotal internet diagnoses, but the problem remains that experts only experience and record hoarders in treatment and we are seeking to understand those whose response is OVER MY DEAD BODY, my mother’s favorite expression. The Typical hoarder in treatment is not the typical hoarder NEVER in treatment… so we feel like pieces of the puzzle are missing on that basis… these are exclusive populations… those who embrace and reject treatment.

          but more puzzling for me is that the OCD/PD behavior was always there while the hoarding developed over time, in my mother’s case, eg it was episodic, ie the Xmas tree she could not take down when I was 4 that we had for Xmas still when I was 5. But the house didn’t become dysfunctional, ie genuine hoarding *disorder* until I was 13, the acquiring and not letting go was always there but it didn’t compromise living space until she was the only adult in the household after her 3rd divorce.

          I also see the defense mechanism but this lashing out is NOT what COH are talking about, they are talking about pervasive behavior outside the hoard that makes them reject parents, cut contact, describe them as manipulative, cruel, controlling, and malicious, in deliberate and premeditated ways… that is not defense mechanism… it is proactive not reactive.

          For example, not as severe, but one from TCM rather than Yahoo, see Gabi’s post about the food/baby shower, that refusal to listen or accept limits is only indirectly related to defensiveness about the food originating in the hoard… her mother is taking her behavior on the go and literally trying to force it down other people’s throats, that’s not defensive. it’s controlling and could only be described as “defensive” as an extreme and warped response to “feeling rejected” when she can’t have her way and bring rotten food to Gabi’s house. That is a refusal to accept a boundary, not a defense mechanism. And that is a very mild example of the behavior I’m thinking of… I hesitate to give specific examples bc of privacy…

          many describe histrionic, paranoid, borderline like behavior in addition to the narcissism… I’m not validating or evaluating it… but it is very striking, puzzling, and intriguing particularly because we are talking about recalcitrant hoarders who will NEVER EVER receive treatment or be seen and included in research.

          What I can say is that the hoarders I interact with who recognize they have a problem and are trying to work on it are nothing like the COH parent population I hear about or have experienced in my mother, these folks all have good insight, substantial empathy, regret, take responsibility, which has also made me wonder further if the active COH population has outlier parents that do REALLY do NOT fit the TYPICAL hoarder statistics… I wish more COH could/would interact with these folks bc it has been really helpful for me … I don’t think my mother is your average hoarder… but COH experience suggests that these atypical hoarders are our typical parents…

          some COH are convinced that most of those ‘typical’ folks aren’t “real hoarders” ie that they fell into hoarding behaviors bc of depression, anxiety, ADD etc and that experts will never understand us bc they will never see/treat “real hoarders”. I don’t embrace that view… but their “real hoarders” sound much more like people who have both hoarding disorder and a handful of personality disorders and that the worst behavior that COH are responding to are primarily PD behaviors but the hoard is most visible and a great source of distress for COH… so it gets very confusing… many seem to feel that parents created the hoard to control and torment them… I’ve never felt this way myself. But do you see what I am getting at…? That doesn’t sound like hoarding disorder and certainly not the diagnostic criteria… their parents meet the criteria but there is a LOT of OTHER stuff going on, but it isn’t behavior that hoarders are going to share with clinicians…

          BTW have you read Jesse scholl dirty secrets or Barbara Allen, nice children stolen from car?

          • This was a lot to take in so I hope that I have addressed each issue for you here.

            The ‘fortress effect’ is definitely a common thread in hoarding. Remember that the clutter is a symptom of hoarding disorder, it is a ‘soothing behavior’ for lack of a better description. This explains why there are physical walls built to reflect the internal fears – which vary from individual to individual.

            The overwhelming majority of hoarding cases are ‘discovered’ since most people struggling with this issue do not self-report. This is due to insight issues (see recent fb post comparing insight in hoarding disorder and schizophrenia. In situation where there is insight, individuals experience shame, embarrassment, fear of judgment, and fear of what help will look like. This keeps them from reaching out for help and is a common barrier that I have to overcome to work with even the most motivated person that is reaching out for help.

            Clearly someone without insight does not see that they have a problem therefore will not participate in a study that they feel doesn’t apply to them. The majority of research studies make note of the limitations of the study, which include the fact that individuals that participate in the studies have insight and are open to treatment. This is a long-standing and well known factor and has not escaped the attention of researchers and specialists in this field. This is a point that I, along with every other researcher/expert/specialist in this field, make at every training.

            Hoarding Disorder is chronic and progressive which explains why symptoms appear over time unlike other mental health issues. Every case of hoarding is different. Even if all the cases met criteria for hoarding disorder, the co-morbid disorders, processing issues, experiences, and circumstances vary greatly. Many people I have worked with were diagnosed with HD when in actuality they had hoarding behavior due to other medical or psychological issues. This is another topic that I thoroughly explain at every opportunity.

            Did I cover it all?

            Look into research done by Dr. Suzanne Chabaud. She has done a significant amount of her research on COH.

            • Have you read Barbara Allen and Jesse Scholl?

              I don’t imagine researchers are oblivious to what they cannot study, only emphasizing that this lacunae is significant issue for many COH whom I talk to… it is a major road block for many who feel that experts “don’t get it.” Many have disengaged… but the landscape is very different from what was out there in 2006 when I last gave this a lot of thought…

            • I would agree that the landscape is significantly different now. Additionally, more and more COH and spouses are getting out in the public arena to speak about their experience and the impact on their lives as well as partnering with researchers. These include, but are not limited to, the authors you mentioned, Cecelia Garrett – who has partnered with Dr. Chabaud, – Tammi Moses, and Lee & Bec Shuer – who frequently partner with Dr. Frost. Cecelia, Tammi, Lee, and Bec are also all members of the Hoarding Task Force Network and The Clutter Movement fb groups, due to intentional efforts by myself for this very reason. The primary goal of the majority of researchers and specialists, like myself, now is to incorporate those with lived experience in all of our research, study, program protocols, treatment, etc.

            • 👍🏻👍🏻👍🏻👍🏻👍🏻👍🏻🙂

            • Group in 30 minutes, will you be participating? Amelia is likely unable to, she’s out of town doing some self-care.