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Voices of COHP



I am not sure where to start because it was always there, but I didn’t realize the danger.  My mom’s hoarding escalated over the years.  Once, it was confined to unruly shopping bags full of papers, then the car became a trash bin on wheels, then the apartment was piled with papers, dirty dishes, cat urine.  We never had food in the house, clean laundry was hard to come by, when something broke it didn’t get fixed.  The indoor landfill she fiercely defended came later. 


I left for college and had no desire to go home.  I didn’t really know where home was because we moved every few years.  My mom went MIA on and off.  When I was a kid, she would leave me with relatives or friends and disappear for a few days, but later no one knew where she was for months. 


Years went by and we ended up living in the same town.  She wouldn’t tell me her address for months until she needed me to put my name on her electric bill.  Her electricity was going to be turned off because she was still using the previous tenant’s name on the bill and didn’t want her name on it.  I don’t think she had any ID anyway.  


She would never let me inside her apartment.  I was struggling to get on my feet so I didn’t have the energy to question her.  Getting past her excuses was an exhausting and ear-piercing ordeal.  I helped her all I could, but it made life beyond difficult for me until a friend let me stay in her home until I could save enough for a decent apartment.  


A few more years went by and my mom ended up moving to a different state.  I was left to hire a hazmat team and clean out what was left of her apartment.  I felt responsible.  Never in my wildest dreams did I think she was capable of what was hidden in that tiny apartment, and I didn’t know there was a name for it.  Hoarding.  I thought I was alone. 


I moved to NYC but it wasn’t long until I was summoned to her rescue halfway across the country.  A couple of years went by with me traveling back and forth, and then I moved again.  I bought a house for both of us to live in.  Somehow, she talked me into it.  


It was fun for me at first because the house needed some work and it was a challenging project.  When the house was ready, my mom balked.  I couldn’t get her to move into the house she had begged me to buy.  Her current landlord asked her to leave and I ended up cleaning up and paying for the damage to her apartment, again.


We made rules about living in the house together but she soon broke every one.  I had high hopes and thought things would improve, but I just got tired of fighting.  A few more years went by and I moved out.  


I tried everything but I just ended up in despair.  The constant stress of the situation paired with the fact that I put her needs before mine led to my health crisis.  My body just said “enough” and I ended up not being able to take care of myself, let alone my demanding mother, for over two years.  I had undiagnosed Crohn’s Disease and it almost took my life.  Even when I was in the hospital for long periods of time, all my mom worried about were her needs.  That’s when I finally woke up.


I started reading memoirs by people with hoarding parents and then I found COH Inc.  I wasn’t alone, not by far!!  But I realized that I could only save myself, I had to let go of responsibility for my mom.  I knew I had to get her out of the house and I inquired about all the local services, but was told that she had to seek help for herself.  My only option was to evict her. 


A welfare check was reported to APS (Adult Protective Services).  She turned them away and they are unable to force anyone to accept help.  I contacted an attorney and started the eviction process and kept her case workers at APS involved.  As the owner, I could not give them permission to enter the house because I no longer lived there, but they could go with me when I conducted the inspection during the eviction. 


After giving my mom notice of a deadline to clean up, I could legally perform an inspection.  I told APS that if they didn’t help while she was in the house, they would be dealing with her when she was sitting on the sidewalk, with all of her garbage, post forced eviction.  They finally saw with their own eyes, and smelled, the indoor landfill.  APS contacted the local authorities and had her taken to the local hospital and placed in protective custody. 


I was left holding the (garbage) bag yet again.  At least this time I wasn’t dealing with the destruction of the property of a dumbfounded landlord.  I had to get a hazmat team to clean it out, but I needed her permission to dispose of moldy, rotted stuff.  My mom wanted to keep all of it, so I asked APS to help me get her to sign the forms and they did.  The hazmat guys said it was the worst hoard they had ever seen, and that is saying a lot.  I put the house on the market “as is” for a reduced price and it sold quickly.  I got to see it after it had been renovated by the new owners and it looked like a home again. 


We live in a rural area with minimal mental health services so my mom was sent to a memory care facility at a nursing home where she was by far the youngest resident.  She remained there for about a year.  She hated it and they hated having her there.  She screamed at the nurses, hit the other patients, flooded her bathroom, and slept on the floor.  They did not have the resources to deal with hoarding disorder and whatever other undiagnosed, co-morbid mental health conditions she has.  They wanted her out, and APS disappeared, so my mom took the opportunity to plan an escape.  I contacted APS and told them what was afoot, and reminded them that a person cannot be released from a nursing home without a care plan.  


They found her a room in an assisted living/group home.  This was much better suited to her needs.  She remained there for a few months while APS put together a plan for a guardianship hearing.  She was put under a corporate guardianship, which was her preference.  It has been over two years and my mom continues to fight the guardianship and remains in the group home.  She will never forgive me for testifying at the guardianship hearing.


I am still recovering.  It might take a long time, longer than I thought it would, but that’s okay.  This illness stole my mom’s life, but it won’t steal mine now that I see it for what it truly is: hoarding disorder.  It finally has a name.  


I can describe some of the material consequences of this disorder, but the internal (emotional, psychological) impact is much more difficult to convey: the narcissism, manipulation, codependence, shame, etc. that often comes with hoarding is hard to untangle because for so many, this is all we have ever known, but it doesn’t need to remain that way.


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