Several rooms in Sallys childhood home were filled with clutter piled thigh-high, rendering the space unusable.
Sally is one of as many as 19 million who live with hoarding disorder.
I knew I wanted to do better.
Sandy Huffaker / Getty Images for YOU Magazine
But I didnt knowhow.
The report lays out several federal policy recommendations to support older adults living with hoarding disorder.
Over time, the clutter accumulates, making it difficult or impossible to use the space as intended.
I didnt think I had a hoarding disorder.
It soon became more than anyone could handle by themselves.
After accumulating so many unnecessary items, I became unable to clean out.
Its different from collecting or messiness, according to theAmerican Psychiatric Association.
Collectors often acquire items intentionally and develop a community with other collectors.
Living among excess clutter can be dangerous.
I recently had to go into my former bedroom because I was looking for a legal document.
The problem was that there were things blocking that door.
I decided that I would bring up the door and climb over the stuff.
Since I wanted to be on the safe side, I had someone on the phone with me.
It was absolutely horrible!
It was a complete disaster!
We all have sentimental attachments.
Our possessions have a magical quality for all of us.
Thats the crux of this disorder, and the consequences of it can be pretty severe.
The most common of these include arthritic conditions, sleep apnea, head injuries, and diabetes.
In 2000, I developed relapsing-remitting multiple sclerosis.
Relapses render me essentially bedbound.
However, the most significant factor complicating my recovery from hoarding disorder is that I was born legally blind.
My limited vision causes me to underestimate how much stuff I actually have.
For instance, many people with hoarding disorder also have symptoms ofattention-deficit/hyperactivity disorder (ADHD).
About half of those with hoarding disorder have significant depression, he added.
Depression was certainly a co-morbidity with my mother from early on, and eventually with both parents.
Hoarding was part of her response.
It doesnt age well, and neither does depression.
The combination is ugly.
Cleaning out their home when they passed was a nightmare.
They could not bring themselves to accept our help when they were living.
Items can bring joy and identity, Rodriguez said.
If they get rid of their sports equipment, that means that theyre no longer an athlete.
So sometimes the objects are very intertwined with identity, too.
Symptoms of hoarding disorder may first appear at around 11 to 15 years old.
But the disorder often doesnt become problematic until later in life.
There are a few reasons why someones hoarding behaviors increase later in life.
Their parents may die, leaving behind a house full of items that hold sentimental value.
It hasnt helped that we live in a three-story house with a basement and attic.
People with hoarding disorder who live alone have a harder time managing their possessions, Frost said.
People with hoarding disorder are often embarrassed to host people in their homes due to the clutter.
Thats an especially big problem for older adults, who tend to be particularly lonely.
I am too embarrassed to have people come and visit me.
When I visit people, their space does not look like mine.
I am clean, I am neat.
But I just have this extra tension, anxiety, and overwhelming stuff that I need to go through.
A non-medical professional may be the first to notice hoarding behaviors.
What Does Treatment Look Like?
Cognitive behavioral therapyis the current best treatment for hoarding disorder.
Frost said that cognitive behavioral therapy can alleviate some symptoms of hoarding disorder for many patients.
At present, however, the treatment isnt a cure.
There are simply not enough clinicians who know how to treat hoarding disorder.
The committee emphasized the need to educate more mental health professionals on this topic.
Frost co-authored a book titledBuried in Treasures, which presents cognitive behavioral therapy practices in a self-help book.
Several people quoted in the Senate Committee report noted the book had helped them manage their symptoms.
There are no medications approved to treat hoarding disorder.
I have done both and it seems to help.
But its not a cure-all.
The stuff was like a protectiona security blanket when I felt unsafe.
In current trials, patients wear a VR headset to enter a virtual version of their home.
A therapist guides them as they practice examining items and letting them go.
Supporting people with hoarding disorder frequently requires a host of agencies and organizations.
But the first people to be impacted by someones hoarding behaviors may be their family.
My husband did not understand what my problem was, quite literally.
It was a source of friction between us.
Much of it was mine.
He did not tell me until they had already come and gone, nor did he ask my agreement.
He was so proud.
The sense of betrayal was sharp.
If anything, it made me hold on to our possessions more tightly.
It can be actually harmful for individuals when they have a forced clean out.
They can feel an intense sense of loss.
There have been individuals who died by suicide because of it, Rodriguez said.
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Senator Bob Casey.Casey unveils new report detailing the heartbreaking effects of hoarding disorder on older Americans.
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International OCD Foundation.Who gets hoarding disorder?.
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