Compulsive Hoarding Syndrome is often associated with obsessive compulsive disorder (OCD). It is a complex disorder, however – many hoarders suffer from other comorbid problems such as chronic depression, attention deficit/hyperactivity disorder (ADD/ADHD), dementia, generalized anxiety disorder (GAD), social phobia, or schizophrenia/paranoia.¹‚ ²

Hoarding is neither simple, nor benign. As we talked about in an earlier installment, “Hoarding: Time to clean out the house,” hoarding can kill.

Ole Bert’s place down the road, six old tractors, a few car carcasses, a refrigerator, rusty stove, lamp skeletons, disemboweled sofas and chairs, a bathtub, heaps of parts for whatever a body could ever want, a few dogs, feral cats around the house and throughout the yard of knee-high grasses and weeds. The shades always drawn. The porch falling off. No one knew what the inside looked like. Bert wasn’t one to socialize at home. No one called it hoarding. When yards were measured in acres, it was just ole Bert’s place.

Not many people live on acres of land now. In the metro Washington DC area as around the country, they’re closer, share walls, small yards abut. Ole Bert isn’t the eccentric living out on the edge of town. He’s next store, and the odors and vermin from his place are invading his neighbors’ homes. Slowly we’re realizing that Ole Bert isn’t just cluttered, isn’t just a collector, doesn’t just have excessive accumulations, isn’t just chronically disorganized, isn’t just a pack rat – he has a serious problem. And ole Bert is our parents, sister or brother, spouse, child, neighbor…ourselves.

Regardless of the causes, individuals with hoarding disorder share four fundamentals:

1. Difficulty processing information;
2. Problems in forming emotional attachments;
3. Behavioral avoidance; and
4. Erroneous beliefs about the nature and value of possessions.
   
   

   Unsanitary, unusable kitchen.

Compulsive Hoarding Syndrome severely limits the use of living spaces and poses safety and/or health risks. Equally important, it interferes with work, social, and everyday functioning.  Often, hoarders cannot cook in the kitchen, wash the dishes, sit in a chair, sleep in their beds, bathe in their bathrooms, launder their clothes – because every surface is buried in clutter. Utilities – plumbing, electricity, heat, air conditioning – usually don’t function well, or at all. Rodent and/or insect infestation is common. Frequently, hoarders have rented storage spaces – nothing more can be shoved into the home.

Hoarders don’t have friends or family in. They’ll meet at a restaurant, a coffee shop, someone else’s home. Or they don’t go out socially. If they work, they go in early, stay late, pick up take-out on the way home. Or they don’t go out at all. They stay secluded inside, behind darkened windows and locked doors.

Hoarding Disorder – What’s Going On?

Although some cases are less severe than others, hoarders are reluctant – often unable – to acknowledge the problem, much less fix it. While they may acknowledge that their collections have gotten out of control, they seem to be powerless to whittle them down or stop collecting. They have no problem, others do. They will tidy it up tonight, tomorrow, or next week, but tomorrow never comes.

While hoarders can be charming, intelligent, educated, personally well-groomed and employed, in their homes they’re unable to get rid of anything. They may need it, it was on sale, it can be fixed and used…. Saving money, recycling, reusing is good – until you have hundreds of 48-roll packages of toilet paper, thousands of canned goods dating back twenty years, mounds of boxes from catalogue orders that haven’t been opened, walls of stacked newspapers, fast food containers and junk mail, and keep on saving, scavenging, compulsively shopping. Yard sales, alley finds and dumpsters can become irresistible, with lots of good (hey, with a little work, it could be good) stuff, for nothing, practically! Napkins, condiment packets from restaurants – no one will care if you take a few…they’re free…you can never have enough!

When someone tries to touch their things – to sort, organize, throw out useless, dirty, dangerous things – the individual will use every “weapon” to make them stop. Stealing is a common charge. The individual will scream, curse, weep, withdraw, become ill, throw things, urinate, defecate, manipulate, bribe, hide, not be at home, refuse to answer the door or phone…run guilt trips that Shakespeare would envy for variety and creativity.

Researchers know the behavior generally begins in childhood or adolescence and that it tends to run in families. Hoarders are likely to be unmarried or divorced, frequently isolated and without family. They may have difficulty meeting and interacting with others, so they surround themselves with things. Later, they experience shame at others seeing the mess they live in, so don’t go out or invite others in.

If family members are not close by, the problem can go unnoticed for years. Yet for the family, dealing with hoarding is tough. Children of hoarders are especially torn – they can feel like the red meat in a dog fight, between what the folks say and coming to the realization that the folks are in real trouble, and they – the folks and the children – need help. If you are a caregiver grappling with this issue, please read our earlier post Caring for the Caregiver.

¹ Frost, R.O.,  Department of Psychology, Smith College, Northampton, MA

²Steketee, G., PhD, School of Social Work, Boston University, Boston, MA

 Side effects of visual impairment can include hoarding or extreme clutter. When seniors can’t see what they are throwing out, they may be less inclined to do so. This “messiness” can, in turn, increase the risk of falling.

 Fortunately, a few companies are realizing that 1) people with limited or impaired  vision would like and can still benefit from cellular technology and, 2) for some, a phone is all they want. One such company is Jitterbug, www.jitterbug.com/Phones. Their offers include live customer service 24 hours per day. They greet by name and can even update the phone’s phone book, thus cutting down on confusion and stress. Other sources for solutions available in the greater Washington, D.C. area include: Vision Aware (http://www.visionaware.org/md ) and the Low Vision Center (http://www.lowvisioninfo.org ).

 If your loved one wants the convenience of using a cell phone but has a problem seeing to dial a number, has trouble hearing incoming voices or gets confused with all of the menu options choices like this could make life easier for all.

Image via Wikipedia

Getting parents help when they need it is part of being an adult child and a caregiver. We have to be their advocate when they cannot, or will not, be one for themselves. At the same time, we have to create healthy boundaries for ourselves. It is possible that you will eventually decide sharing a home is not the best situation for the two of you.

“I like the way you described your mom — funny, generous, and great company.” That’s a good place to start, focusing on what’s good about her and her life. Thinking about the ways she benefits you even now helps especially when things get harried and you get overwhelmed with all that “stuff” around you.

Before you can tackle the compulsive hoarding issue, you do need to know what you’re dealing with. The causes of compulsive hoarding can be psychological or neurological. You really need a physician such as a neurologist or a mental health professional to diagnose your mom. An expert can also give you practical advice on how to keep a compulsive hoarding mother safe.

In addition to any prescribed therapy and medication, I recommend encouraging her to visit a bereavement counselor, support group, or both. Losing a son and husband can have a profound, possibly devastating, effect. She might also be suffering from depression. As much as you love her, you can’t be her all-in-all. If you’re having a difficult time with grieving over your own losses, share that and tell her that you’d like to find grief support together.

Ask yourself, are there ways that you enable her? Do you take her to garage sales because she likes to go — even though you know it feeds into her hoarding? Do you give her attention for her behavior, even if it’s negative attention, by complaining constantly about the “stuff?” It’s really hard to look at what our role is in our loved ones’ unhealthy choices, but we often feed into their lives just as they feed into ours.
Even with help, the compulsive hoarding problem is not going to go away fast. You are still going to be tested and frustrated. Be consistent. If she needs medication, make sure she takes it. If she needs therapy, make sure she gets there. She will be looking for you to forget, get tired, and give up. So don’t.

You can do these things whether or not you are living right there with her. If you do decide to keep living together, is there a way to create your own space? Could you have a bedroom door you can shut (perhaps even lock) when you are not home, and your own private bath? That could make a big difference while you work on the issue with professional help. Some caregivers mark off with blue tape a “clear zone” of, say, three feet around a living area.

I also find that focusing on the word “beauty” is a less-insulting way to discuss the clutter. Try telling your mom you need to clear the table so the two of you can have a space of beauty to eat your dinner.
Continue to protect a separate life from your mother. “When I cared for my mom, I learned that I simply could not meet all the physical and emotional needs of another human being — it was too much.” So ask for help. The more we create a circle of care around our loved ones, the more we help enrich their lives — and open our hearts to others.

Often we learn from our parents in unexpected ways. Perhaps your “life lesson” here is to learn to create a sense of space and serenity in your heart no matter what your outside surroundings may look like. I have known people who lived with hoarders and later took up feng shui or became a professional organizer! What I am saying is, try to glean something good from being with your mom. That is what we have to do with life. Forget making lemonade out of lemons —make margaritas!

Author: Carol O’Dell, www.Caring.com

http://www.caring.com/blogs/dear-family-advisor/moms-a-hoarder-whose-stuff-is-keeping-us-apart

The hallway looked like any other. But the smell was overpowering the moment the elevator doors opened. Getting into apartment 411 was like going into another world. The stacks of garbage and trash were so tall and so closely crammed together that there was almost no way to open the front door. Hundreds of soda bottles filled with a gold liquid were throughout his home – it wasn’t soda….

Hoarding:

1. the acquisition of, and failure to discard, a large number of possessions that appear to be useless or of limited value;
2. living spaces sufficiently cluttered so as to preclude activities for which those spaces were designed; and
3. significant distress or impairment in functioning caused by the hoarding.

Our first encounter with the compulsive hoarding phenomenon was in 1998 with Mrs. X, a widow whose apartment management had notified residents that new windows were to be installed. Residents had to remove all furniture and other objects three feet from windows in front and two feet on either side. When we arrived, we found an apartment so filled with hoarding clutter and accumulations it was nearly impossible to enter or get around.

The shocked question was, “Where do you expect us to put anything we move?” Boxes filled with paper – newspapers, invitations to exhibitions, letters, junk mail, tissue, stuff – were stacked all the way to the ceiling next to the walls, and waist to chest high throughout the rest of the apartment. Other accumulations were scattered about. There were only narrow paths from room to room, and not enough clearance for two people to pass. We did not have to do anything in either the kitchen or bathroom, but both were so filthy any normal person wouldn’t use them.

Then Mrs. X took us to her second apartment – she’d rented it in the same building after she couldn’t get anything more in her first apartment. The second apartment looked just like the first.

We didn’t even have a word for what we saw. Today if one Googles™ ‘hoarding,’ nearly three million hits will result, yet even a few years ago little was in the mainstream media about this obsessive compulsive disorder. Care for You is not in the business of medical diagnosis, but we certainly knew that what we were seeing was abnormal.

Immediate and Long-Term Consequences of Compulsive Hoarding

After completing the work for the day, we chatted awhile, getting to know her. We also pressed our case that she continue using our services. We stood the whole time because there was only one place to sit and she needed it. She was worried that management would discover her mess and evict her.

Mrs. X agreed to have a Care for You Companion visit one day per week for three hours to help with daily chores. However, upon arriving Mrs. X would not allow the Companion to do anything. After about six months we quit trying, as companions were unwilling to go there and stand in clutter and filth, doing nothing. And Mrs. X decided she didn’t need our help anymore.

Mrs. X, six years later: The social work agency called with another hoarder case. A lady had fallen in her apartment and broken her hip. The stacks of accumulations had fallen on her, trapping her for two days before someone in the hall heard her weak cries. When the EMT arrived, they could not get in and contacted the building management before breaking down the door. They also had difficulty getting her out of the apartment.

Upon release from the hospital, she entered a rehabilitation facility for several weeks. Mrs. X still had the two apartments. Both were still hoarded, worse than when we worked with her in 1998. Over an intense four-week period, Care for You sorted the garbage from the real possessions, hauled innumerable loads of trash, and cleaned her apartments so she could return home. In the process we unearthed a bed in one living room that we didn’t know existed, her Will, stock certificates, uncashed checks from years ago, and over $6,000 in cash – between papers, in canisters and jars, under cushions, as bookmarks…. What about Mrs. X? She wasn’t able to recover from the severity of the injury, the two days without food and water and lying in her own waste. She died within two months, and never returned home.

Mrs. X was the first of our clients to die because she refused help, and no one was there to ensure that the problem was addressed. Over the years, three other clients have been killed by their accumulations. Unlike Mrs. X, they all lived in single-family homes, with no shared walls with anyone else. Therefore, health and fire were not able to issue citations in a timely manner. When no one else is endangered, the legal process is long and slow at best – it’s not against the law to be a hoarder. In two cases the family was not able to withstand the violent, searing attacks of the parents. They backed off, traumatized themselves – “it’s their life, they’ve been like this as long as I can remember, that’s why I left, I’m not taking it any more.” In the third case there was no family. We worked with a medical social worker who was familiar with the situation to try to prevent what we knew was life threatening. We had no authority, the law had no authority. What we feared would happen, did. So, by the individuals “winning,” they lost their lives.

We’ve learned a lot since then. In upcoming installments we’ll discuss what compulsive hoarding syndrome is, the professional team needed to deal with it, case studies, legal issues, government interests, and how to maintain the progress once dehoarding has been achieved.

(Hoarding definition from Frost, R.O., & Hartl, T.L. (1996). A cognitive-behavioral model of compulsive hoarding. Behavior Research and Therapy, 34, 341-350)

What questions can a person ask to help answer this big question?

We began talking with her a year ago. She was 86, spry, mentally sharp, unsteady on her feet, used a walker, and had fallen “maybe a couple of times, but wasn’t hurt, just some bruises.” Her house was seriously cluttered. She couldn’t get around using the walker because there wasn’t room for it. She didn’t want to do anything until she talked with “her boys.” Her boys were in their 50s, with families, jobs, homes. The son who lived nearby came to his mom’s 3-4 times a week. The son who lived out of state came one weekend a month. The boys said, “Mom, you need some help, more than we can give.” Mom said she’d think about it, maybe next month. Eleven months passed.

A meeting was set up for Monday among her, her boys and Care For You.

The boys had just come from Suburban Hospital. She’d fallen the previous Thursday evening, wasn’t found until Saturday morning. The injury was severe. Her right leg was amputated at the thigh. C-diff infection set in. We talked about rehab, building a ramp, refitting the bathroom, de-cluttering. Three weeks later she died.

Sad. Frustrating. Avoidable. …and not uncommon. Most seniors want to stay in their homes* – fiercely. Age in place. Keep control. Remain independent. After 14 years professionally, and a decade personally, we’ve learned the ultimate irony: the biggest threat to someone losing their independence, and sometimes life, is fear of losing independence.

Determining if and when your loved one needs caregiving assistance demands objective observation. Usually, it’s defined by FUNCTIONAL ABILITY, not by age. It’s important to:

• Ask revealing questions,
• Pay attention to the telltale signs,
• Look for patterns of consistent neglect.

The following questions are a tool to help determine if in-home care is needed. Just as difficult, they can help direct how to talk about it. If the answer to Number 1 – “Is it important to the person to continue to live independently in their own home?” – is yes, then the focus moves to:

• What is threatening the person’s safety?
• Why can’t s/he stay home?
• What has to be done to remove the threats?

How do you take stock of the “situation” – your loved one’s, and yours?