The day has finally come. You arrive home from the therapist’s office to whom you and your child were referred to by the school. The diagnosis explains the challenges he has in class and with keeping up. You now have a label. Doctor’s names, medications, treatments, and therapies are spinning in your mind. In a way, this label makes sense; it gives you something with which to work with. In another way you want to shrug it off as over-examining a creative, energetic child. You have a foreboding sense of no return.
Solutions to either overcome the issue or control the symptoms so that they do not impact major life functions become your top priority.
Gather information about the diagnosis. Knowledge is power. The more you understand the situation the better prepared you will be. You’ll ask better questions and identify the best services for your loved one.
Seek support services for your loved one. Make a list of agencies that provide support to individuals and families impacted by the particular diagnosis. Does the support include family members as well as the child? Are there tutors, therapists, and organizers who specialize in this area? Does Supplemental Security Income play a part? Is the child eligible for Medicaid? Primary and/or secondary insurance may be important if there’s a medical component to the issue.
Create an organized structure to maintain information. For instance, I love using the phone app any.do to track tasks, calls, errands, and projects. All lists can be easily shared with anyone you choose, and reminders can be linked with your calendar. Evernote is extremely useful for organizing notes and records. For example, I’ve created a “notebook” for a loved one whom I’m helping to navigate the healthcare system. Within his Evernote “notebook,” individual “notes” have been set up for each doctor to track visits and medications prescribed. Another “note” can be added each time we visit a particular doctor. A parallel filing structure has been created for any paper records that need to be kept for the purposes of benefits and possible questions or disputes.
Self care is as important as advocating for your loved one. This is hard for all caregivers, especially moms. However, the common anecdotes are true. You are no good to anyone if you’re depleted. Even brief periods of relaxation can be restorative. A few minutes of meditation, exercise, coffee, a phone conversation with a friend, or a lunch date can do a world of good. Healthful meals and good sleeping habits must be prioritized when under stress. I’ve heard some say that time away feels like time or money that should go to their child (or loved one). Please consider this, if you’re frazzled and on edge your children will pick up on it and may not understand your stress. Consider hiring a babysitter, taking turns with your spouse or a sibling for a little time off, ask a grandparent, or a trusted friend for help.
Most importantly, remember differences don’t need to be viewed from a glass in half-full position. In fact, the more we know about different disabilities, the more we know about their hidden blessings. Many people with differences have hidden talents (depending on the disability) surpassing the typical personal: creativity, an ability to recognize detail, sheer honesty, an indisputable sense of right and wrong, a great ability to focus for long periods of time, very high IQs, exceptional memory, unconditional love, dedication … I could go on and on. Back when I was in school, there was a focus on improving student deficits. Now, finally, thinking has come around to concentrating on and developing student talents. I hope it’s a bright age for those with differences and that we can learn from each other.
Meanwhile, gather information, seek support services, stay organized, and don’t forget to take care of yourself. I’m cheering for you!
The Philadelphia Hoarding Task Force, a coalition seeking to improve the outcomes surrounding hoarding issues, hosted a hoarding intervention workshop led by Jesse Edsell-Vetter. Jesse presented an innovative intervention model that he has developed and implemented with an impressive 98% success rate. The key to his model is the shift of focus from the “stuff” to the person.
In the past, Jesse, a Case Management Specialist with the Metropolitan Boston Housing Partnership, had used a common approach when dealing with hoarded homes. He would explain the health and safety issues and cite the code violations that had to be resolved to prevent eviction. After leaving the person alone to address these issues, follow-up meetings predictably showed little-to-no progress. A clean-out was the inevitable next step, costing an average of $10,000. Over time, Jesse observed the homes return to their hoarded state. Focusing solely on the clutter has proven to be extremely costly and unsustainable as a treatment option. Beyond the monetary cost, the emotional trauma is also a factor. In one tragic example, a family returned to their home after the clean-out and committed suicide.
In response, Jesse shifted his approach from focusing on the “stuff” to focusing on the person: who they are, their commitments, their struggles and what moves them. For the majority of us, life’s challenges leave scars and hurts that dissipate with time. For people with hoarding behavior, woven in the items they hoard are their scars on display for all to see and judge. While a clean-out removes the “stuff,” it does nothing to unlock the stories and hurts interwoven in the piles. Jesse’s model, in contrast, coaxes these stories out with respectful, compassionate and nonjudgmental interactions emphasizing the human side of the clutter, lessening the grip of extreme hoarding habits.
During the workshop, Jesse shared a case study about Bob, an elderly man challenged with health problems, living alone, facing eviction, and surrounded by paper piles, some as high as seven feet tall. Rather than mandate compliance to codes and leave Bob alone to manage his stuff, Jesse explained the safety requirements to Bob and asked how he could help. Jesse gained Bob’s trust with empathic statements like, “I worry that X” and “I am concerned because Y.” As Jesse rolled up his sleeves and sorted through the piles with Bob, he asked questions such as, “Tell me about your X” or “Tell me about these papers I see.” This technique of “curious questioning” revealed Bob’s vulnerabilities (mental and physical health, traumas, and family history), his cognitive processes (problem solving, attention, and executive functioning skills) and his core beliefs (values, responsibilities, and how he sees his place in the world). Jesse learned that Bob came from a very religious family. Three of his sisters were nuns, and he himself had wanted to be a priest. Struggling with his sexuality, at age 20 Bob told his family he was gay. He was then shunned by his family and his religious community. Fast forward from that time in the early 1960’s to the present day, Bob’s apartment was a manifestation of that devastating loss. One item Bob hoarded was church bulletins. He attended church services every day, each day taking copies of the bulletin with the intention of sharing them with others. From the overwhelming piles, it was obvious though that this rarely happened. Using a team approach, a cornerstone of his intervention model, Jesse invited Bob’s priest to collaborate. Seeing how committed Bob was to his religion, the priest asked Bob to assist him in providing communion to people who were unable to attend church. In that moment, Bob recovered his purpose in life and adopted a healthier expression of his deep connection to his church and community.
Bob’s story illustrates the human side of Jesse’s 98% success rate, showing what’s possible when we leave our judgments at the door, stop addressing the person’s “stuff” and instead, unlock the stories and hurts buried in the hoarded piles. When intervention models lead with the threat of a clean out, walls go up, but, as Jesse has shown, when the intervention is infused with respect, non-judgment, curious questioning, statements of concern, clearly articulated expectations and actions, motivation and genuine praises for milestones met, partnership and collaboration becomes possible and the work of letting go and healing begins. In Bob’s case, when the priest invited Bob to help him, Bob was able to connect to his life again and the importance of his “stuff” could take a back seat.
As a follow-up to my blog post from last year at this time, I am thrilled to report that the Philadelphia Hoarding Task Force (PHTF) is in its second year and making headway.
In 2013, the Philadelphia Hoarding Task Force a coalition of organizations dedicated to increasing access to services for people with hoarding behavior, created a bold mission:
“To improve outcomes for people who hoard and reduce the catastrophic consequences related to hoarding for residents of the City of Philadelphia.”
An ambitious undertaking to say the least!
In its first year, PHTF had four major accomplishments:
1. Resource Guide – This guide offers immediate and non-immediate resources that may help a person with hoarding behaviors live a safer, healthier life. It can also be used by organizations that have clients who have hoarding behaviors. Please click the link for further details Resource Guide.
2. Helplines – Assist those with questions regarding hoarding-related issues in the Philadelphia area.
Under 60 years of age: 215-751-1800
60 years of age and above: 215-545-5728
4. Educational Workshops – “Introduction to Hoarding Workshop”
This workshop is presented by one of PHTF’s Education Committee members and is offered free of charge to the public. These workshops are listed on the website.
Arrangements can be made to have an “Introduction to Hoarding Workshop” done for a specific group or organization that serves the Philadelphia community. Email PHTF at firstname.lastname@example.org.
Standing on the accomplishments of 2014, the Philadelphia Hoarding Task Force is working to expand its services to include case management, support groups, therapy and cleaning services. The 2015 goals for PHTF are to:
A statistic listed on the PHTF website notes that individuals with hoarding behaviors account for two to five percent of the population—an estimated 23,600 to 59,000 adults in Philadelphia. These numbers are alarming and reveal the need to address this issue individually and as a community.
The approach of the PHTF is based on three key principles:
1. To focus on the person, not the problem or the items they hoard. At the heart of their work is an awareness that behind every hoarded home is a person who needs help, not judgment. They require patience and respect from everyone involved.
2. Since there can be serious consequences for people who hoard because hoarding can be a serious hazard, PHTF advocates solutions that will help resolve emergency issues while also providing support over time.
3. PHTF seeks a balance between the rights of the individual to live as they choose with the needs of the community. PHTF believes that hoarding goes from being an individual struggle to a community problem when it threatens health, safety and livability for those living in a hoarded home, their neighbors, and also the service providers, contractors, and emergency responders entering a hoarded home.
In short, PHTF works to provide individuals and organizations in the region with the tools they need to successfully overcome the challenges associated with hoarding behavior and the public safety hazards that may result.
May the ‘Force’ be with the Philadelphia Hoarding Task Force again this year as it continues to make headway through these uncharted waters!
As professional organizer I hear people label themselves especially when they call for help. Usually this occurs while doing an assessment on the phone. Often, the person calling states or describes themselves as a hoarder. My opinion is that, due to reality shows like Hoarders or Buried Alive, people seem to identify themselves from what they see on t.v. People use this label even when they aren’t a hoarder. It’s become a generic label that people use falsely to describe themselves. These days, what you see or hear in the media soon become buzz words used by many. In times prior to reality shows these people may have called themselves pack-rats. They may be defined as people who gather, accumulate, store quantities of items for too long — for many “meaningful” reasons. Generally, hoarding behaviors fall under the category of chronic disorganization.
With my 10 years of “hands on” experience and educational classes on chronic disorganization, my definition of hoarding is this: Hoarders are people who are emotionally attached to their things and gather excessively beyond the norm. This includes trash as defined as items soiled, damaged, expired, unhealthy, worthless, or nonsensical. They place a higher value on these items and sometimes have irrational reasons why they hold on to them. They will acquire and put themselves in harms way in order to keep these items in their physical space. They will choose to give up all support and interaction with other human beings. What they acquire and choose to keep — become and are — their prized possessions. They will jeopardize their own safety in order to keep these possessions. They can live in filth and squalor. They endanger themselves and the dwelling’s structure and home’s safety. In extreme cases they will become homeless in order to hold onto their prized accumulations.
Hoarding is a clinical term now recognized by the American Psychological Association and is included in their Diagnostic and Statistical Manual (DSM). In the current edition, DSM-V, this disorder, Hoarding is newly defined. After so many years, hoarding is now being studied, researched, and evaluated individually. It also can coexist with several mental disorders and diseases.
Professional Organizers ask pertinent questions when doing an assessment so we can best serve the individuals. We do not judge people, and quite often find people use the “hoarding” term too broadly and too often.This is so sad, CLUTTER will make anyone feel unhappy.
Labeling yourself can be self defeating. Labels can help identify and create awareness for change. But labeling yourself as a hoarder can ultimately give you a negative self image. It will dis-empower you; its negative connotations will not forward your growth or the process. Support is important, especially if you feel like your living space is out of control. Please get assistance either from a healthcare professional, your physician, a professional organizer specializing in chronic disorganization, or from all 3 sources. The key is awareness, getting help, and taking action!
The Institute for Challenging Disorganization offers this:
“Chronic disorganization is having a past history of disorganization in which self-help efforts to change have failed, an undermining of current quality of life due to disorganization, and the expectation of future disorganization.
FOR MORE INFO, please check out this link: http://www.challengingdisorganization.org/
“We can’t solve problems by using the same kind of thinking we used when we created them” — Albert Einstein
My cat, Tiger, is 21 years old. That makes him 101 in cat years. As he has gotten older, many things Tiger used to do have become hard for him, so we’ve responded by helping him age in place.
Tiger walks slowly, very slowly. His legs are bowed, his back is crooked, and his once powerful hind legs are wasted. Years ago, Tiger easily leapt into the air. Now, he needs help getting on and off my husband’s chair. Externally, Tiger is very changed from the strong young cat he was. Internally, though, Tiger seems much the same. His favorite pastime is still sitting quietly on Bill’s lap, giving and receiving love. As we noticed physical changes in Tiger, we began to think about what we could do to help him remain independent and injury-free. In addition, we felt badly each time Tiger failed at something he had once done so easily; we worried that he was embarrassed, and we wanted to preserve his dignity. Tiger has always had a lot of dignity. So we began to implement a series of aging in place modifications.
Since Tiger can no longer jump onto my husband’s chair, we installed a three-step pet ladder so Tiger could get on and off the chair on his own. At first, Tiger distained using the ladder, but when attempts to jump resulted in falls, he quietly adopted it as his normal method of access. We built similar steps to and from a sunroom window, and while Tiger seldom goes outside anymore, when he does, he uses these steps rather than jump the 18 inches.
Some months ago, we noticed that Tiger was urinating outside the litter box. At first, we wondered if he had become confused, which can happen to old cats. Then we guessed that perhaps Tiger could no longer step over the 5-inch high walls of the litter box. We cut out a special entrance to the litter box with a one inch high lip, and Tiger immediately began using it. He wanted to continue his former behavior; he just needed some modifications.
We’ve changed other things for Tiger as well. To keep his weight up, Tiger gets a can of wet food every night – a welcome change no doubt from the dry food he has eaten his whole life. So far, it’s working. Tiger tips the scales at 7 pounds – good for a very old cat. Like many old cats, Tiger has kidney problems and drinks huge quantities of water to compensate for his failing kidneys. As a result, the litter needs to be changed daily, and we’ve surrounded the entire litter box with paper since Tiger sometimes misses the actual entrance.
Tiger loses great quantities of hair, and because of his arthritis, he can no longer groom himself properly, so we brush him each night. We know that Tiger has cataracts in his eyes, his hearing is impaired and his meow is scratchy, but in our eyes, he remains a handsome elderly gentleman.
We sometimes think about how Tiger spends his days now, as compared to his youth. He still naps in the sunlight, enjoys watching birds on our front porch and sits on our lap every night. Although he cannot do many of the things he used to do, it seems to us that the essential Tiger – the sweet, loving cat we have always known – is still there, and that Tiger has a good quality of life.
As I think about Tiger, I can’t help but make comparisons to how I would treat an elderly family member, or how I would want to be treated myself. I would want to be as independent as possible, in a familiar environment that maximized my dignity and minimized the impact of my impairments. I would want to be surrounded by people who accept me for who I am, even though I may be different in many ways from who I once was. I would want a good quality of life, where I could continue to do the things that are important to me. And like Tiger, I would want to give love as well as receive it.
So in addition to being the best cat in the world, Tiger has even taught me lessons on how to age.
In my work organizing finances and paper for aging adults and people with chronic illnesses and disabilities, certain problems tend to recur. Among them are:
Here are five different web sites I have found useful in addressing these issues:
Better World Books (http://www.betterworldbooks.com/)
Several years ago, I helped close out an estate that included nearly one thousand books. They were heavily concentrated in engineering subjects, and varied in age from 15 to 100 years old. The owner was emphatic that they not simply be recycled or buried in a landfill, and that they should benefit people in need if at all possible. Better World Books provided the way to grant these wishes. This organization is a huge on-line used book store. They accept any size donations of books, and try first to sell them through the web site. Proceeds are used to fund literacy programs around the world, but, even more important to my client, books not sold through the web site are actually shipped to third-world countries that can use them. Only when these two alternatives are exhausted are the books recycled—and never sent to a landfill. Better World’s staff was extremely helpful, and taught me how to inventory and package the books. Better still, they sent a tractor trailer to the site to pick the books up and transport them to the Better World facility, all at no charge to my client or me.
Care Calendar (http://carecalendar.org/)
In the site owners’ own words, “Care Calendar is a web based system to organize meals and other help for families during a time of illness or life changing event, such as the birth of a baby or death of a family member. “ It allows a family, group of friends, or organization to coordinate care for an individual in need by posting and responding to assignments such as meals, visits, rides and errands. Currently, I am using Care Calendar to coordinate care for a frail elderly woman living in her working daughter’s home. I posted the mother’s needs on the web site, and friends and family members have responded to fill every assignment. Care Calendar greatly reduces the need for phone calls and follow-ups, as the site forwards me and the care recipient a list of upcoming assignments and volunteers on a daily basis. The service is offered free of charge, and donations are invited.
Get Human (http://gethuman.com/)
Did you know you can talk to a live human being at Amazon or Ebay? Get Human enabled me to do just that. The site provides free direct-dial contact numbers for over 8,000 businesses, along with other direct contact avenues such as call-backs, live chat and email.
It’s Deductible (http://turbotax.intuit.com/personal-taxes/itsdeductible/)
How do you know how much to deduct as a charitable contribution on your taxes when you give away a mountain of things? It’s Deductible, a free online service from the makers of TurboTax software, combs the internet for actual selling prices of commonly-sold items. The site allows the user to create lists of items donated, by charity, by date, and then provides the fair market value for the item. Where prices aren’t available, guidelines on establishing the FMV are provided. At tax time, the lists can be printed out or imported into TurboTax. I have been using this service for myself and for my clients for nearly ten years, and have yet to be challenged by the IRS.
Medicare’s Nursing Home Compare (http://www.medicare.gov/default.aspx, then select Resource Locator/Nursing Home Compare)
Three years ago, this free service quickly allowed me to find nearby nursing homes and compare them on a host of relevant features when my father suddenly became too ill for me to care for him in my home. I found a wealth of excellent advice that enabled me to make a rapid decision with confidence. A similar comparison feature is available for Home Health Care in the same Resource Locator menu.
Did I mention that all of the above sites do what they do for free? If you or someone you care for is facing worsening illness, down-sizing or simple frustration contacting businesses, give one of these sites a try. I’m confident they’ll help you as they’ve helped me and my clients.