Hoarding Disorder Case Background

A family expressed concerns over their mother, who had become increasingly isolated and confused. She fed her “needs” by buying throughout the night on QVC. During a home visit, we observed hundreds of unopened yellow QVC bags and the contents of many additional QVC purchases strewn across the home. There were pathways going between doors and several rooms, with large stacks of items (5 feet+) along the paths. Two bedrooms were closed off; the doors would only open a few inches due to floor-to-ceiling contents stacked from wall-to-wall. The floor of the master bedroom was covered with items, and only a tiny portion of the bed was available for sleeping. The client had several cats who were using the few open spaces as litter boxes.

How did this case of hoarding disorder get referred for help?

The family came to town to visit when the client’s sister died. Her sister also had hoarding disorder and had purchased hundreds of items from QVC. Her body was found in her home amidst the clutter and it took firefighters six hours to remove her body from the home because stacks of items had to be removed first. The family was distressed by their Mom’s living situation, especially in light of her sister’s death. They asked the client’s financial planner for a referral to get some help.

What problems was the hoarding disorder causing?

The client’s problems were numerous:  isolation, loneliness, confusion, and depression. She was suffering from malnutrition, and bruises and broken bones from falling in the home. Her environment had become increasingly unsafe. The family was suffering from fear, anger, frustration and overwhelming stress.

As is common in cases of hoarding disorder, the client would not see a professional and did not feel she had a problem. She rationalized each and every purchase. She could not allow any item to be moved, none of the empty bags could be tossed (She would say, “I might need the packing slip inside to return it.”). Any attempts to move items or declutter caused her great distress.

Initially, her family felt that cleaning up would be sufficient. Later, they began to understand the nature of the hoarding disorder and her depression and dementia. In cases of hoarding disorder, simply cleaning and decluttering typically won’t resolve the problem long-term. The client had only one friend, a financial planner, who did not “see a problem” and reinforced client’s right to live as she chose.

Hoarding Disorder Case Approach

An initial meeting was set up by the family via the referral from the financial planner, with the thought that an assessment was needed to identify services that could allow the client to remain in her home.

The care manager did a full assessment on the client and home environment, with a review of medical records and discussion with primary care physician. The care manager showed photos of the house to the physician, who had initially stated there were no concerns, no dementia, and no hoarding disorder. Once the physician saw the photos and discussed the situation with the client, he gave a diagnosis, started medication, and recommended that the client should not remain in the home.

During this process, the care manager took the client to her physician for a routine exam. He discovered she had an infection from one of her cats and she was hospitalized for treatment. During her stay at a rehabilitation facility after the hospitalization, the care manager helped the family to set up an independent living apartment for her. This provided an opportunity for cleaning out the home (the family arranged to change the locks and items were packed up for donation, sale, etc.).

Fortunately, the client was successful in the apartment for a few years. The care manager helped to arrange for the shopping channels to be blocked from her TV, and outgoing long-distance calls blocked on her phone. Her Power of Attorney helped manage the situation and safeguard her credit cards. The POA paid the bills and provided limited funds for spending money, to halt excessive purchasing.  

What were the biggest challenges in this hoarding disorder case?

The biggest challenge was the client’s dementia. While not severe, it was enough to keep her from moving forward with any treatment. She was also easily manipulated, and her one friend became overly involved in her situation. He took her to an attorney to appoint a new Power of Attorney (DPOA) and Healthcare Surrogate (HCS).

Once the new DPOA/HCS was in place, her friend hired a new company to oversee things and she became estranged from her family.  The new arrangement only worked out for a few months, and then the friend began overseeing everything personally. He eventually moved her to an assisted living facility, where she died following a fall. Unfortunately, the client never reconciled with her family.

What lessons can we learn about hoarding disorder from this case?

Patience, patience, patience! Family members need to understand that hoarding disorder is not about “the stuff.” It is about control and feelings. If there is no dementia present, there is potential for therapy and support to move a person along. It is a long, slow process, and therefore can be quite expensive.  

It is important to have planning documents in place (DPOA and HCS).  The DPOA/family can help situations of hoarding disorder by restricting access to credit cards and cash available for purchases. But, as this case shows, those documents can be changed. Hoarding disorder can be very persistent and many clients will undo the efforts.

If there is dementia present, the likelihood of any successful resolution in the home is minimal.  If dementia is present and the person is at risk due to safety issues in the home, it may be necessary (and quickest) to contact Department of Children and Families (DCF). If they find the client is in danger, they can get the client out of the home and into a supervised, restricted setting.  If safety is not an issue, and if the person is eccentric but not demented, there is little that one can do.  People have a right to make bad decisions, and families may have to wait until the situation becomes worse.

Help for Hoarding Disorder

Contact Aging Wisely online or at 727-447-5845 to discuss how our team can help you if you are concerned about a loved one’s hoarding.

For more information and hoarding resources, check out these related posts:

Signs of Hoarding: How to Know if Someone is a Hoarder

Mail Hoarding and Scams

Pet/Cat Hoarding

The ASPCA defines cat hoarding (or animal hoarding, in general) by three criteria:

• possessing more than the “typical” number of companion animals
• inability to provide even minimal standards of nutrition,sanitation, shelter and veterinary care
• being in denial of the inability to provide the care (and the impact of that failure on the animals, the household and themselves)

These symptoms and the triggering factors are much the same as other types of hoarding, though the physical situation may be quite different and the harm to the animals adds an additional twist.

Cat Hoarding Case

This wealthy, elderly gentleman in Tampa was being treated for cancer at Moffitt Cancer Center. The social worker had referred him to home health for some home services while he waited for treatment. The home health agency had contacted Department of Children and Families (DCF) when they saw the condition of the home and feared for his safety; DCF had referred him to Aging Wisely care management.

The client’s home was sparsely furnished.  The house was full of cats, with dozens of litter boxes buried in cat feces. Cat feces and urine stained the floors and carpets (piles of cat feces 6-8 inches thick in parts of the living room and dining room). The client’s room was cluttered with trash, soiled clothing and old papers. The plumbing was not working in the bathroom which he continued to use, so the bathroom was completely unsanitary and unsafe.

DCF Referral to Aging Wisely

This gentleman was scheduled for surgery at Moffitt, but needed a stable place to go to recuperate.  He had no family or friends. The social worker was not aware of his home situation. The home health agency pulled out when they saw the home situation and contacted DCF. He did not have dementia and DCF was not equipped to deal with him. His assurances that he would clean up his house allowed him several chances. There was food in the refrigerator, the cats were fed and had water. Cat hoarding (or other animal hoarding) is never an easy situation, and it is not clear why animal control was never called.

The client had to agree to assistance from an agency to avoid being removed from his home by DCF. He was referred to Aging Wisely. Care manager Julie Scott shares more about her work on this case.

What approach was used for this case?

The referral started with a home evaluation, during which I quickly determined the scope of the problems. I contacted the Moffitt social worker to get him admitted to the hospital. I then pulled in a company that specializes in this type of work, to do the initial cleaning. I engaged a home health company to clean the kitchen, restock the pantry and refrigerator, and to work with the cleaning company on the organizational tasks.

What happened with this case of cat hoarding?

The biggest challenge is that we were really limited in fixing this up in a “short intervention”. There was going to be no ongoing care management/oversight once he returned home. We were able to resolve the immediate problems: getting the client admitted and quickly getting house cleaned, plumbing fixed and purchasing a new bed and some furnishings. The client returned home after surgery with home health and private caregivers coming in 2-3 times a week to cook, clean, and declutter. Unfortunately, the client eventually had to move from his home to a skilled nursing facility. The cats were taken to a local shelter.

What are the important take-away lessons from this case?

Cat hoarding/animal hoarding is a nightmare. Not only is the person at risk, but so are the animals. The relationship between the client and their animals is distorted, with the overall neglect that these animals are actually experiencing despite the meaning they hold to the person.  It becomes difficult to focus on the needs of the person because the animal neglect is overwhelming. While this man thought he was giving these animals good food and access to water (and he was), he was not able to keep up with the litter boxes, or their shots/veterinary care.  He would bring in a stray, a cat would have kittens, and the cycle would repeat.  He loved these cats; he had no family or friends.

When loneliness starts, the opportunity for intervention needs to be acted on as soon as possible. Though healthcare professionals are subject to mandatory reporting of abuse and neglect, this case shows just how widely that can be interpreted (and therefore ignored) and how cat hoarding and other types of hoarding can manage to stay hidden or not addressed for so many years.

Resources for cat hoarding cases:

Animal control/advocacy: Visit Pinellas County animal services and Hillsborough County, for information in the Tampa Bay area. The SPCA of Tampa Bay takes reports of animal cruelty and receives animal surrenders.

Cleaning companies: Look for companies that specialize in hoarding or crime scene cleanups (if you can’t find them online, funeral homes and local police may be able to give you a resource). Spaulding Decon is one of the companies we have used in Tampa, with multiple locations.

Home health agencies/caregivers: In these cases, someone is often needed to help with organizational tasks, working with the cleaning company and doing follow up after the “big clean”. Also, of equal importance, having ongoing support is going to be vital to ensuring continued upkeep and supervision. Regular caregivers in the home can also reduce the loneliness and troubleshoot as problems arise.

Aging Wisely’s care management team is here to help you and your family with hoarding situations or home safety concerns. If you have concerns about a situation, we highly recommend you reach out to us sooner than later. Just talking to one of our advocates can be quite a relief and get your pointed in the right direction for help. Call us any time at 727-447-5845.

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*Image courtesy of scottchan at FreeDigitalPhotos.net

We will be sharing three cases of hoarding that our care management team have helped with over the years. If you are concerned about someone who is hoarding, we hope that seeing these case examples and the care plan, challenges, outcomes and our team’s related advice will help you. Our team is just a phone call or email away if you need help for hoarding.

Hoarding can take many forms (check out our post on signs/what distinguishes a hoarder). Our first example is a specific type of hoarding and may be a little different than cases you have heard of or seen.

Hoarding Scenario

The client was an attractive, bubbly and social elderly woman who lived alone in a condo. Her family lived out of state and seldom visited, though they did talk to her on the phone almost daily. This client was the victim of multiple email and sweepstakes scams. She was also on every mailing list imaginable, and her mail box was overstuffed daily. As she wanted to read, respond, and write checks to help causes or win prizes, her home was full of mail/paperwork clutter to an extreme degree. Aside from the many thousands of pieces of mail everywhere, the home itself was clean and tidy.

Common signs distinguishing this behavior as hoarding include the inability to throw items away, difficulty organizing, severe anxiety about throwing anything away (in this case, a compulsive need to look through and respond to everything) and distress over the mail. She was quite social, but she would not let her many friends into the house.

Impairments/Problems from the Hoarding Behavior

In terms of functional impairment, not only was the mail and paperwork overtaking the home but the behavior was resulting in financial problems. Stacks, bags, boxes, piles and drawers full of mail were everywhere.  As she worked through a little at time, she would toss the envelopes to the floor, creating a slipping hazard.  She would eventually gather these up and recycle some. She would bounce checks because she would continue to write checks for the sweepstakes, the charity solicitations, etc. Even when she knew she had no money left, she would continue to write the checks. Family members were constantly being asked to send money for food, which would go towards one or two meals, and then go to feed her habit.

How did the client or family come to seek help for the hoarding?

The client’s son came down to help find paperwork for her CPA to do her taxes and found the house full of papers. Though they were aware she had been having money problems, as with many hoarders, she hid the problem as much as she could and they didn’t understand the full extent of the issue until they saw the home. The son took care of getting what was needed for the CPA but had to return home. He sought help from home and was referred to Aging Wisely.

First Approach to the Hoarding Problem

As with all hoarding cases, a careful and gentle approach is necessary. If a professional doesn’t understand hoarding, he/she will often fail at the first approach (it’s not an easy problem to tackle even for seasoned professionals, but knowing how to approach someone who is highly anxious about their items and deeply distressed is vital to getting anywhere with solutions).

In this case, a home visit was conducted as a possibility of getting a “housekeeper” in to help with “tidying”. The care manager used her experience with hoarding to gently work with the client toward solutions that would not overwhelm her. In this case, she would not agree to any other outside party to come in but would allow the care manager subsequent visits to help sort through the papers. The process began with client and care manager going through the mail piece-by-piece, but as the care manager built rapport and reduced the client’s anxiety, she permitted a more general “sorting” and recycling of many of the papers. It was essential that the care manager create a calming presence and discreetly handle the items chosen for recycling to minimize the anxiety-producing cues.

Case Challenges

Time was the biggest challenge in this case because so much work was needed, and there was not much money to fund care management assistance. In other cases, we have been able to bring in partners and/or get a client medical/psychological help but in this case only the gentlest approach would work and the client refused outside help.

The care manager made attempts to take the client off mailing lists, but the volume of mail (and continually being added to more lists) was staggering. The volume of papers was being reduced slightly, but more and more were being delivered. In other cases, the care manager has been able to convince the client to permit a change of address to redirect mail, but this client refused.

Outcome of Mail Hoarding Case

Unfortunately, the client was arrested for writing a bad check one weekend and spent the weekend in jail (due to her age, she was placed in the medical unit). Once released, she returned home and the care manager recommended a move closer to her family (and away from the overwhelming home environment). The client moved to an assisted living facility near her daughter, where the family could check in regularly and handled her paperwork for her.

Advice/Take-Away Lessons

It is important to evaluate changes in behavior (either new or increased) sooner rather than later.  This can be very difficult for family members and it is easy to find yourself justifying, condoning, placating, etc. as your loved one denies the behavior and even hides the extent of it.  Unfortunately, this often results in the problem becoming out-of-control and difficult to solve. As soon as you see it, you should attempt to bring in professionals to deal with the underlying issues. Hoarding is not about the stuff, it is about control, and the person’s feelings (real or imagined).

When there are functional signs (in this case, even if the family may not have seen the home safety dangers, but the financial problems were a strong sign of an increased problem), seek an experienced professional to do an evaluation and make recommendations. Someone experienced with hoarding can usually find a way to access the environment and make progress towards solutions (it may be slow progress, but the earlier that intervention starts the less urgent it will be).

Stay tuned for next week’s hoarding case studies, where we will discuss animal hoarding, online/phone shopping, and severe home safety/cleanliness issues and the resources and techniques our care managers used in helping these clients and families deal with hoarding.

Thanks to care manager Julie Scott for providing information on her work on this case. To read more about Julie’s extensive experience with professional care management and her specializations, click here for her complete bio.

The signs of being a hoarder aren’t always as obvious as the pictures above. Older loved ones often accumulate many belongings over a lifetime. What makes someone a hoarder: when does the normal accumulation of belongings cross into potentially detrimental hoarding behavior? How can you identify if your parent is a hoarder or if you’re being overly concerned?

What Distinguishes a Hoarder

Hoarding is the persistent difficulty discarding or parting with possessions, regardless of their actual value (Anxiety and Depression Association of America).

Someone who hoards shows the following symptoms, which help to distinguish a hoarder from someone who simply has too many belongings:

• Inability to throw away items
• Severe anxiety about discarding items or shown when attempting to discard them
• Great difficulty organizing items
• Indecision (about what to keep or where to put possessions–may say things like, “I’m trying to decide which room would be best for these papers” when the papers have been in the hallway for many years)
• Distress (the possessions are often not a pleasure for the person but cause embarrassment or anxiety)
• Protectiveness of the items: suspicion of other people touching them
• Obsessive thoughts and actions: irrational fears of running out of/needing items, checking obsessively on the items whereabouts or counting
• Functional impairments: problems experienced due to the hoarding behavior such as compromised living space and home safety, health hazards, financial and relationship problems and isolation

As you can see, there are some key differences between a hoarder and a collector (or someone whose possessions have accumulated due to physical, financial, or other barriers to getting rid of them). A collector will take pride in items and often display them in an organized fashion.

Though a collector may spend a great deal of time collecting and finding information about what he/she collects, this behavior doesn’t cause functional life problems. The behavior of a collector tends to cause pleasure, where for a hoarder the possessions cause distress and anxiety. Despite this, the hoarder most often doesn’t see the behavior as a problem.

Research about Hoarding

Hoarding was first defined as a mental disorder in the 5th edition of the DSM (Diagnostic and Statistical Manual of Mental Disorders) in 2013. It has been associated with Obessive Compulsive Disorder, though its features are a bit distinctive (such as the lack of awareness/acknowledging the problem, whereas OCD patients typically identify a problem but cannot stop the behavior). Hoarding doesn’t seem to stem from the same neurological mechanisms as OCD or respond to the same medications. Research professionals believe there may be a few different types of disorders at play in hoarders (some combined with OCD or as a part of OCD behavior, while “pure hoarding” is an independent disorder). Hoarding is more common in people with other issues such as depression, anxiety and ADHD. A hoarder has often experienced a major life stressor, such as death of a loved one or divorce, and difficulty coping.

Signs of hoarding behavior may show up in childhood, but its symptoms are usually worst in later life as the hoarder has had time to accumulate possessions. Many times we see cases where the hoarding was somewhat hidden (or known only to close family, who had little success dealing with it) until the person becomes ill, experiences falls/gets hurt or needs eldercare services to come into the home.

Help for the Hoarder

Dealing with a hoarder can be very frustrating and overwhelming. We will share more in our next post about resources and how our team has helped hoarders and their families. In the meantime, don’t hesitate to contact us online or by phone (727-447-5845) to find out more about help for the hoarder.