If your loved one suffers from hoarding disorder, you’ve likely tried to help. You may have offered to clean her home or to hire someone to do it. You may have suggested that your loved one meet with a therapist or talk about the problem with a doctor; you may have purchased books on the topic and given them to your loved one to read, or searched for hours on the Internet for resources that could help—and, to all these efforts, your loved one has said no. Your loved one’s refusal to accept help, or even to admit that there’s a problem, is perhaps the most frustrating and demoralizing aspect of the problem for family members. The first step toward helping your loved one is to understand why he or she is reluctant to accept help from you or perhaps anyone.
Why They Refuse Help
Although some with the problem do see that the clutter is excessive and that their living conditions are unsafe and uncomfortable, many do not. Many people who hoard resist or avoid treatment or help. They appear baffled by family members’ reactions to the clutter, and are oblivious to the risks and discomfort that come with living with too many things. Typically, these people are older and have suffered from the problem of hoarding disorder for years, often decades, and live in very dilapidated and unsafe conditions. They tend to minimize the severity of the situation with comments such as “My house isn’t that messy,” and show little awareness of the problem, even though they may be smart and rational in other ways. Typically, when these people do accept help, it’s because others have forced it upon them. Even when refusing help may mean eviction, some people still say no.
Poor insight, disagreement about how to solve the problem, fear, hopelessness, resentment and mistrust, and personal values are some of the reasons your loved one refuses help.
Poor Insight. Clinicians describe people who don’t appear to recognize that their thoughts or behaviors are excessive or irrational as having poor or low insight. The adult daughter of a woman who had hoarded for thirty years described her mother in this way, “My mother’s a very bright woman—she’s a Phi Beta Kappa, for God’s sake—but when it comes to her stuff, it’s as if she has a hole in her brain. She just doesn’t get it.” Hoarding disorder appears to be a condition of low insight, as are other psychiatric conditions, such as psychotic disorders (particularly schizophrenia), anorexia nervosa, or body dysmorphic disorder. Because low insight prevents people who hoard from perceiving that they have a problem, they don’t believe they need help. However, this isn’t to say that people who hoard never feel distressed or uncomfortable. Many do. Most often, however, they’re distressed only when other people either prevent them from saving more things or when public health officials force them to either clear out their possessions or face eviction.
The simple fact of the matter is this: people don’t see that there’s a problem unless they feel distressed by it. That’s why you’re more eager to solve the hoarding problem than your loved one: the hoarding problem distresses you more than it does your loved one, and no amount of reasoning, cajoling, arguing, or threatening is likely to change that.
Disagreement about the Best Solution. Sometimes people who hoard admit that they have a problem, but don’t see it the same way family members do. Your loved one may tell you that it’s not that bad or that it really doesn’t interfere with his life all that much, and certainly your loved one will scoff at the idea of seeking help or treatment for the problem. Instead, your loved one will suggest that you help him find more space to store his acquisitions or to remove a few things from his home when what he needs is a much larger clear-out intervention.
Disagreement about the best solution to the hoarding problem often leads to endless and circular discussions about what to do. At first, both the family members and the person who hoards believe that they’re working on the problem. Only later, after many arguments and hurt feelings do they realize that they’re digging in rather than digging out.
Fear. Often people who hoard refuse help because they’re afraid. They may fear discovery and eviction or that others will come into their homes and, in a frenzy of helping, clear out all of their possessions. Due to the fear of discovery they don’t permit people into their homes who could repair the refrigerator, stove, or leaky toilet. If they rent, they never complain to the landlord about a broken pipe or furnace, because they fear the landlord will want to come into the apartment to have a look around. They know at some level that if others discover the hoarding problem, they’ll suggest, perhaps insist, that something be done. This fear isn’t unreasonable, because if the problem is discovered, that discovery may lead authorities to remove all or most of the possessions or to even evict your loved one from his home. Because they fear discovery, people who hoard often live in dangerous and unhealthy homes.
If you have a family member who hoards, you may fear discovery of the problem as well. If the landlord evicts your loved one, where will he go? You may not be able to afford alternative housing for your loved one, such as a retirement or assisted-living facility. Even if you can afford alternative housing for your loved one, you may worry that the facility’s managers won’t accept your loved one if they know that she has a hoarding problem. If an assisted-care facility refuses your loved one, would you want him to live with you, knowing that the hoarding problem would come as well? For these reasons, family members will sometimes help their loved one keep the secret, not just because they themselves are ashamed about the problem but also because they know that once the problem is discovered, their lives and the life of their loved one will be in the hands of strangers.
Hopelessness. Many people who hoard refuse help because they don’t believe they can really change. This is particularly true for people with severe hoarding problems, who’ve acquired and saved for thirty or forty years, or more. The idea of clearing a home filled with decades of possessions is daunting. The task likely would take many days, if not weeks, of effort by many people. People who hoard tell you that they’ve tried to solve the hoarding problem. They remember working many hours each day organizing, moving, or going through their possessions with the goal of clearing their homes, yet their homes remained largely the same. They feel hopeless that any real change can happen, and they’ve given up. Other people who hoard accepted help clearing out their possessions but soon found that the problem crept back. As they grew older, it became harder and harder to try again, and they became more and more hopeless that any real and sustained change was possible.
Resentment and Mistrust. Another reason why people who hoard refuse help is that they no longer believe that they can ask others, such as family members, for support, in part because everyone involved in the hoarding problem feels bitter, resentful, and angry. Hoarding problems dissolve once caring and compassionate relationships into bitter and volatile ones. Most family members of people who hoard remember years of arguing, yelling, and screaming about what to keep and what to throw away. They resent the birthdays or holidays they missed because they couldn’t invite anyone into their homes. Or even when a holiday was celebrated among the piles of paper and refuse, these family get-togethers soon soured at the first mention of mom’s or dad’s hoarding problem.
Adding to this emotional burden is the effect of eroded trust and goodwill. Most people who hoard tell stories of family members coming into their homes and carting boxes away without permission. A daughter might invite the loved one who hoards out for breakfast, while a son cleared a room of stuff. They’re hurt and angry and wonder, “Whom can I trust now? Whom could I ask for help if I even wanted it?” On the other side, family members are desperate and see that they had no choice but to remove their loved one’s possessions. They worried about their loved one’s health and safety day and night. Some family members would do it again, if they could get back into the house. Others feel deeply ashamed of their deceptive behavior but had tried everything else and nothing had worked.
Personal Values. Often people who hoard refuse help because their acquiring and saving, as well as the possessions themselves, confer on them a special and valued role or sense of importance. In other words, hoarding satisfies a set of important values for the person who hoards. This is why it’s so very difficult to give up hoarding behaviors. Even if a person who hoards has insight into the problematic nature of the hoarding, certain deeply held values related to possessions can make it very difficult for her to change. Although people who hoard may deeply value their relationships to family members, and desperately want to repair the damage that the hoarding problem has caused, they simultaneously value the meaning their possessions confer on them. A father may see himself as the man with all the answers and thereby justify his acquiring and saving as a way to have, when others need it, the name or telephone number of a family member or friend, the list of summer camps for a neighbor’s children, or an interesting television or radio program that he has recorded. Similarly, a mother may believe that her possessions represent a personal virtue. She may see herself as a woman with great aesthetic sensibilities and therefore she keeps all manner of interesting magazines, postcards, and fabric swatches.
How to Help
Helping the loved one can take several forms, but the particular way of helping likely depends on the situation.
If the loved one is open to help. If you’re one of the lucky family members with a loved one who’s open to treatment, we urge you to help her find it. However, it is essential that you keep your loved one involved and informed about what you are doing to help. Do not call her doctor, her therapist, or anyone else on her behalf without getting the go ahead from her first. Do not work behind her back or ‘plot’ with other family members to get her into treatment. Keep all discussions out in the open.
The first step is to begin to educate yourself and your loved one about the options. Usually, this means finding a qualified cognitive-behavior therapist in the community who is experienced working with hoarding problems. Remember though, ask for permission to make the first call. Strive to be as transparent as possible. In addition, educate your loved one about the benefits of medications that might help her with the additional problems that affect many people who hoard that makes working on the hoarding problem more difficult. The most common problems are depression and inattention and the right medications could help. Clarify for your loved one that these medications may not significantly change the hoarding behavior but they can make her more effective in learning the skills necessary to change hoarding behavior and to declutter her home. When you discuss any of these options, remember to stay calm and provide the facts about the ways treatment can help. Do not cajole, threaten, or insist your loved one sign up for any treatment. This will likely only close the door.
If your loved one refuses any and all help. As you likely know all too well, the problem of hoarding disorder isn’t easy to solve, in part because many of those who suffer with the problem don’t see that they have a problem. This is perhaps the most frustrating part of the problem for most family members. You’ve likely tried a great many things to no avail, and possibly resigned yourself to walking away from the problem and letting it be. However, letting it be isn’t easy to do when you lie awake at night worrying about your loved one’s health and safety. You see the risk, the danger, the harm, but what can you do when your loved one refuses help?
If your loved one refuses treatment, you might consider an approach that focuses on managing the harm or risk your loved one faces so long as she continues to engage in hoarding behavior. Many times, loved ones are a bit more open to accepting help that de-emphasizes discarding and instead focuses on managing the risks of living in a highly-cluttered home. In harm reduction, you and your loved one create a plan that identifies the most unsafe areas in her home and then you and your loved one agree to work together to keep those areas clear of clutter. Your loved one might agree to keep clutter off the stairs or two feet away from the stove. Your loved one might agree to keep the doors to the outside clear of clutter in order to be able to exit the home quickly if there is an emergency.
For those who are forced to accept clear-out interventions, few are able to keep their homes clear without ongoing assistance. Harm reduction takes the long view about the problem of hoarding disorder and focuses on helping your loved one live safely and comfortably in her home so long as she is in her home.
If your loved one is facing a clear-out intervention
If your loved one’s hoarding problem has become a public situation, you and your loved one may be facing what authorities call a “clear-out” intervention. In a clear-out intervention, municipal authorities step in and remove the bulk of the possessions from a home in order to protect the health and safety of those who live there. Typically, a clear-out is a last-ditch effort in a series of failed interventions by officials and family members. A single clear-out intervention can cost the town or county tens of thousands of dollars in labor and special equipment or cleaning services. Furthermore, a clear-out intervention does little to change a hoarding problem. Once your loved one is facing a clear-out intervention, your job is to make the best of a tough situation by using the situation to benefit your loved one now and in the future.
Provide Emotional Support. Clear-out intervention can be traumatic for your loved one Before, during, and after a clear-out, your loved one will need additional emotional support. Many people will enter your loved one’s home, with or without permission. This is the time to reconnect with your loved one. Ask your loved one what you can do to help. Find out and then explain to your loved one who is likely to be present (types of county officials and support personnel) and what their roles are in the clear-out intervention. In addition, you can take the lead in connecting your loved one to resources, such as her church, clubs, or other community organizations. You can ask the authorities for ideas of other support services in your community that can help your loved one. Last, think about what will make this day easier on you too.
Partner with the Authorities. When a hoarding problem becomes public, there are no “bad guys.” Most professionals are heartbroken when they must force your loved one to leave her home. This is likely the worst part of their jobs. Your loved one may tell you that the authorities are forcing her out of her home. However, if anything, the law is forcing your loved one out of her home. The authorities, unfortunately, are there to carry it out the law.
Once a hoarding problem becomes public and a municipality has ordered a clear-out intervention, it doesn’t do you or your loved one any good to take it out on the authorities. Making the best of the situation means working with the authorities so that they can do what they must in the most caring and compassionate way possible. They can be terrific allies as you try to help your loved one. Ask the authorities for time to take a limited number of pictures of particularly treasured objects to preserve their memory. This may be a helpful way of retaining a physical connection with a proportion of belongings.
Remember that clear-out interventions solve the stuff problem but not the hoarding problem. Give your loved one some time to grieve the losses of the clear-out and then gently encourage her to accept help in managing the hoarding problem, either through treatment or through a harm reduction approach.