The Impact of a Hoarding Environment

How do you identify the difference between harmless clutter and a serious hoarding disorder? On this insightful episode of Eldercare on the Air, host Michael Amaruso sits down with geriatric social worker Anne Pagano to explore the complexities of hoarding environments and how they affect individuals and their loved ones.

Learn to recognize the nuanced signs of hoarding disorder and understand how to approach these situations with empathy and care. Anne shares expert advice on creating safe, functional spaces while respecting the emotions and attachments tied to possessions. Discover strategies for reducing risks like self-neglect and falls, as well as steps for fostering trust and collaborative solutions.

Whether you’re helping a loved one age in place or seeking guidance for addressing a high-content home, this episode will equip you with compassionate strategies and essential tools for navigating these challenges effectively.

Transcript

SPEAKER_04 0:00

You've lived well, you've worked hard to make your place in this world. Your dignity and security are earned and well deserved. Or maybe you have a loved one who needs you more than ever. Well, we can help you help them plan life better. Amaruso and Amaruso.

SPEAKER_01 0:27

Welcome to Eldercare on the Air, a weekly radio show with guests in the fields of eldercare, special needs, financial services, independent living, and yes, people just like you. Where we will empower you to make sound choices when you're faced with an eldercare or special needs crisis. My name is Michael Amoruso, an elder law and special needs attorney with Amoruso& Amoruso in Rybrook, New York, which services clients in New York, Connecticut, and Massachusetts. You're at our new home, 107.1 The Peak. But I do encourage you to go onto our website, eldercareontheair.com. That's eldercareontheair.com. Click on the radio show tab you see. And just simply download the episode you'd like to listen to. You see, this show is designed to arm you with the knowledge and tools that you need to make sound choices to help you or a loved one age in place. If you have any questions or would like to hear topics on future episodes of Eldercare on the Air, please send us an email at info at eldercareontheair.com. That's info at eldercareontheair.com. In this episode, I want to talk to you a little bit about some areas that are a little sensitive to talk about, but they're necessary in the aging process. Have you ever had the experience where maybe you walked into a loved one's home, someone that you, maybe your mom or your dad, for years they've always had things neatly in place, but when you open that door, all of a sudden you realize, wow, there's a lot that's been accumulated. You have a mix of emotions. You're a little hesitant to address it with them, understand what has happened. You're wondering whether maybe the home either got away from them or the apartment or whether they're hoarding. We're not sure how to handle that kind of a situation. So today I'm thrilled to have on the show with us Ann Pagano. Now, Ann is a geriatric social worker. Right. And you are with Pagano Senior Care. Excellent. Well, welcome to our show.

SPEAKER_02 3:08

Thank you so much, Mike.

SPEAKER_01 3:10

It's a pleasure to have you here. So let's just talk a moment, you know, about that very fact, first of all. Everyone is not a hoarder.

SPEAKER_02 3:23

No, and I'm going to stop you right there. Right. From an educational standpoint, I'm very strong on helping people understand that people should not be labeled. So the word hoarder should really never be used to identify a person. We'll get into hoarding disorder as a diagnosis, but hoarding is multifaceted and it really is, there's different levels to it. So when we do see what I described, refer to sometimes as a high content home. We can call it somebody with a hoarded environment. And then we can do sort of the forensic investigation as to what the reasons are why there is so much clutter in the home.

SPEAKER_01 4:08

And when you say high content home, what do you mean by that?

SPEAKER_02 4:11

Well, let's start off with clutter. Not all clutter is equal. It's not the same. Many times people will have clutter and My home can get cluttered at a moment's notice.

SPEAKER_01 4:25

Mine as well.

SPEAKER_02 4:25

I do things like my mail will build up on my front table for the week, but I will set a goal for myself and say every Friday afternoon, I'm going to make sure that I get my mail sorted out. I make sure that my dishes are put away at the night so the kitchen's clean when I go to bed. When somebody's home starts to become disorganized, and the clutter builds up, the first thing we want to know is, are there reasons why that's happening? And because I work with seniors as a geriatric care manager and I do predominantly home visits and I go into the home and I start to see clutter, I talk with the person and I identify what's going on. If it's an older person who's now dealing with some challenges where they might not have as much energy anymore. They may be dealing with aches and pains from arthritis or joint replacements or chronic illnesses are just really deterring their ability to be able to do activities of daily living. Things will build up because they just don't have the capacity and the energy to do their activities of daily living that they were able to do a year or two or more ago. So those people are at risk for what we call self-neglect, which is not independently actively being able to take care of both themselves as well as their environments. A key concern is not so much the clutter that's building up, but the risks that it can pose. So if somebody brings and has shopping bags full of food and put them on the floor in the kitchen, meaning to be able to put them away when they have more energy, or the books start to pile up next to their easy chair rather than going back into the shelves, these are fall risk potentials. If somebody is unsteady on their feet or if they're using an adaptive piece of equipment like a walker, a rollator, or a cane, if they happen to trip or fall and lose their balance, they suddenly risk limiting their ability to be independent at home Because if they fall, there may be a hip fracture. They may end up in the hospital. They might not be able to make it up the stairs in their home. And the whole point of wanting to be able to preempt these issues of potential self-neglect are to be able to keep the person in the home environment of their own choice.

SPEAKER_01 7:06

So that would be an example of maybe just someone that's aging. And the consequences of their body or their mind or energy level, things just start to get away from them. Or they, as you said, they put something down and maybe they forget about it. And then they put something else down and forget about it. And eventually that just starts to pile up. That's different than a different type of disorder,

SPEAKER_02 7:37

correct? Correct. That... That's sort of one that comes on when you just don't have the capabilities anymore. Hoarding disorder is an actual psychiatric disorder. It's been its own distinct psychiatric disorder since 2013, and its prominent signs are excessive acquisitions, things coming into the home, coming into the home. It could be through purchasing things. It could be by bringing free things in. It could be through finding things on the side of the road. Saving. Things come into the home, but they don't leave the home. And then a key hallmark is extreme distress with the thought of discarding. People get attached to their items for many, many different reasons, and they have a hard time making decisions as to whether to give it away. to sell it, to be able to donate it or recycle it. There's all these concerns and issues that can arise, and only through talking with them and understanding what their issues are, that is what we try to work with when people do have this true classical psychiatric component of hoarding disorder. So

SPEAKER_01 9:02

when a loved one comes into their parent's home, or grandparents' home and sees this clutter, if I'm hearing you correctly, there should not be an assumption that your loved one is now a hoarder.

SPEAKER_02 9:17

Correct.

SPEAKER_01 9:19

So in a situation where you do have a hoarder, how do you address

SPEAKER_02 9:26

it? A person with hoarding disorder.

SPEAKER_01 9:27

Correct. How do you handle that?

SPEAKER_02 9:30

Well, Oftentimes, the first call of concern I will get is from a family member. And they will label their mother, their sister, whoever, as a person with hoarding issues. And I will ask about the environment. I will ask what it is. And I will ask if the person would be willing to consider letting me come in. Because again, what they're identifying as hoarding disorder may not actually be hoarding disorder. And sometimes we put our own values in place where if I keep a pristine home that Martha Stewart could come over for a cup of tea and a drop of a hat, that's my lifestyle. I can't put that on my other family member who might want to live in a more eclectic kind of funky environment. So I look to make sure if an environment is safe, comfortable, and functional, meaning it may look funky, things might be a little bit erratically placed, but essentially if the kitchen is working, they have a place where they can eat, their bedroom works as a bedroom, and their bathroom is functioning, if there's quirky things all over the place, that's who they are. If they want to organize or they need help or are interested in organizing, we can certainly look at that. But we're not going to get on their case for not having a home the way I would want to keep it.

SPEAKER_01 11:13

So is your initial assessment when you're asked, can I come into your home, are you, obviously you're not a psychiatrist, but your initial assessment goal, I guess, is to determine which side of the spectrum or somewhere in between this person may lie.

SPEAKER_02 11:32

Well, getting an outsider into a home can be challenging. And when I talk with a family who may be the ones expressing their concern, I will talk and I'll say, would your family member be open to speaking to somebody who is there to support aging in place. So I try not to use non-threatening words. I always look to see where I can have a parallel goal with a person because, again, I'm asking to be invited into their home. I will be their guest in their home.

SPEAKER_01 12:12

And that's important

SPEAKER_02 12:13

to you. Oh, extremely. So I'm not coming in as an authority figure. I'm coming in to see how I can support this person. And if they're willing to let me come in, The first thing I really do, I don't jump into the meat and potatoes of what I talk to about with the family for 20 minutes. I want to learn about them. I want to do a lot of listening. And I also do a lot of looking around to be able to get a sense of how they're living, how they feel they're living, and if it's working for them.

SPEAKER_01 12:49

Excellent. So, Ann, we're going to take a quick commercial break. But when we get back, I'd like to... maybe explore what you feel is the most important thing that you do when you first enter a person who has hoarding disorders home. Something you and I talked about prior to this show, and I think the audience really needs to understand your perspective how to gain trust in somebody.

SPEAKER_02 13:17

That would be great.

SPEAKER_01 13:18

We'll come back in a few moments. If you've missed any part of this episode, After the live broadcast, just log on to eldercareontheair.com. That's eldercareontheair.com. And we will be back in a few moments.

SPEAKER_00 13:30

Amoruso and Amoruso LLP advises clients on how to obtain public benefits, including Medicaid, and more importantly, how to protect and preserve their assets, whether they be modest or significant. Find Amoruso and Amoruso online at eldercareontheair.com. Amoruso and Amoruso, a 107.1 The Peak Ask the Expert partner.

SPEAKER_04 13:50

Amoruso and Amoruso, empowering you to care for the ones you love.

SPEAKER_01 14:00

Welcome back to Eldercare in the Air. I'm Michael Amoruso, and I am very happy to be here with Anne Pagano of Pagano Senior Care. Anne is a social worker, and we're addressing a very important topic. It's that topic where not all of us like to discuss it, but if you ever walked into a loved one's home and were just surprised about the state of the interior of that home, has clutter built up? Has it gotten to the point where you can't walk around anywhere? Are you surprised because this person that you've just come to visit is someone that was always keeping their home in pristine shape? Or has the home always been this way? Anne is going to help us dive into how to find the assistance that may be needed so that person can continue to age in place in their home. So Anne, again, welcome to our show and to our audience out there. If you missed any part of it, The earlier portion of the show, just log on to our website after the live broadcast at eldercareontheair.com. And you can listen to everything Ann had to say in the first half of the show. So, Ann, where we left off before the commercial break, we were just discussing what you do when you walk into a home. And there are two different opposite spectrums. You've got the person that may have a hoarding disorder. And then you have the person where the home may have just gotten away from them over the years. And there's sort of a different approach or blending, which I'm sure you'll get into, of how you handle each situation. So let's first start with the person with hoarding disorder. You walk into their home. What is the most important thing in your mind that you need to do immediately?

SPEAKER_02 15:52

Thank you, Michael. So first of all, sometimes... I'm prepared. I've got a sense that on the other side of the door is going to be some sort of chaotic environment. Other times I may be going for one reason or another and then totally surprised by the technically elephant in the room by then seeing a very hoarded environment once the door opens. So I do a lot of education and presentation to other professionals and families on hoarding disorder and some of the key components are being able to control what you say and any kind of nonverbal communication that you express because people with hoarding disorder are very vulnerable to criticism. They try to protect themselves from other people's comments. They're worried that opening up their homes, maybe making them vulnerable to change it when they're not ready to change. So they're trying to protect their things and they're trying to protect themselves. So when that door opens, I first have to make sure that I'm going to stand there and keep smiling while the door opens and I start to absorb what's back there. If I do indeed see a very hoarded environment, My brain is going to work very quickly and I am going to look very hard and very sincerely to find something to compliment. And it has to be an honest, sincere compliment or the very bright person standing in front of me is going to say that's a load of baloney and they'll shut the door on me.

SPEAKER_01 17:39

And that's because they're assessing you at the same time. They're

SPEAKER_02 17:41

assessing me, whether they can trust me to even let me over the threshold. So I may look in and say, that, you know, Mrs. C, that is a beautiful lampshade. It's a beautiful French provincial pattern. And nine times out of 10, I'm going to surprise that person because they're ready and prepared for that critical comment. The, oh my goodness, look at what you have in the house, or wow, you've got a lot of stuff. I also say to people, watch the way that you look, even practice in a mirror. Don't let your eyes bug out in horror. Don't let your chin drop down with your mouth open in horror. Try to maintain just a normal posture and stance because you're still being welcomed into somebody's home, whether it's high content or not. It's just going to be more challenging for them to trust you enough to come in.

SPEAKER_01 18:44

And the other thing you mentioned to me before we started broadcasting was if you see a chair and you want to sit down and there's something on that chair, how do you go about that?

SPEAKER_02 18:56

People with hoarding disorder have very different relationships with their things than, I would say, we do. And not to make the distinction, but us non are people without hoarding disorder. So If a book is on a chair, that chair may suddenly have become that book's home. So if we were to move it, we are violating the space of that book, which I know sounds a little unusual, but there are rules. And so one of the things that I maintain with a person is that I do not move anything. I do not touch anything. If I do start to work with them on considering making decisions about their things and trying to enhance their home in what I call a harm reduction manner to be able to get it safe, comfortable, and functional again, we will set an agreement that nothing will be thrown out without their approval or touched until they know they have control. So I'm not going to try to sneak some ShopRite flyers into my bag to try to get some of the clutter out. they will notice because what I may think is clutter or garbage or junk may be very prized possessions for them.

SPEAKER_01 20:20

For them, exactly. How do you engage in that conversation with them?

SPEAKER_02 20:24

How do I do that? Yeah. Well, again, sometimes on my first meeting with them, we might not even start to address the home at all. I want the goal is to be able to come back And I want to hear what's important to them. I want to hear them talk about if they show me around their home, I will listen to the clues in their language. They may say, these are my prized African masks that I got. when I was a recreation director on a cruise ship. And you take note of that. And I'd be like, wow. So they're very important. Then, you know, all these photographs are things that I hope to put in a book sometime. So I hear important. And then I'll hear, you know, on here are two piles of garbage that have just been here forever. I don't know what to do with them. And I'm afraid to take them downstairs to the office lawn to the disposal area in my building because I don't want comments from the building staff. So now I start to see the categories of importance of items. And based on what I hear from them, we may obviously start to address some of the lower risk categories rather than starting off with the the most prized kind of possessions.

SPEAKER_01 21:51

Excellent. Now, what about someone who's on the other side of the spectrum where the home just got away from them? How do you change your approach when you walk into that door?

SPEAKER_02 22:03

Again, that's more when I put on my aging in place hat and say to them, you like your home? Is this where you want to stay for the foreseeable future? How is it, how long have you lived here? And that's always a key question. I say, okay, five years ago when you were here, was it easier for you to go up and down the stairs? Is there anything that's a little bit more challenging or difficult to do now than say a year or so ago? And then sometimes I'll try to, again, ease the conversation. I'll say like, for instance, I can't do cartwheels anymore, which I could never do in the first place, but I like to keep it light. I like to keep it human. And once they start to talk, I say to them, sometimes remaining independent means engaging some support in order to be able to be independent. Because some people hold on to their independence thinking they don't want a housekeeper, they don't want a home health aide, they don't want anybody coming in. So there's a little bit of education that I work with with people to try to say, is it worth it to get that little extra support to be able to give them the independence and the home that they love.

SPEAKER_01 23:21

So take me to the next step. You've gotten through the introduction on both sides of the spectrum. You've gotten through the introductory aspect. You've taken some note of prized possessions, things that are not as important to the person on the one side, and you've got the other side of the spectrum where they want to be independent. They know things have gotten in the way and they need maybe a system in place for them. What's your next step?

SPEAKER_02 23:49

So starting with the people who need a system in place, it may be that I just need to work with them to give them additional referrals to resources that can help them and help their families all sort of work and come up with a plan. And depending on the reason it was referred to me, that may be the end of my involvement with them or there may be other care management issues that I'll continue with. But that wouldn't necessarily be the focus of it because we'd put more of like a collaborative plan in place. For people with hoarding disorder, I've got assessment worksheets that I use with them and we try to identify risk assessment and key areas that oftenly come up when government code enforcement issues come in if the fire department or the police department start to get concerned or if the ems has tried to get in and they're concerned they can't get up the stairs or a person has been discharged from rehab and visiting nurse announces it's unsafe for one of our staff to be there so we can't provide in-home services these are the key immediate remediations that will work with people to maybe be able to clear safe spaces and not necessarily remove things. And once we're able to get the place fairly safe on an initial risk assessment, then I will start to test the waters to see what their readiness for change is in terms of making decisions to get rid of the broken air conditioners that they've been collecting with the thoughts of fixing one day and donating them. People with hoarding disorder often have very grand ideas. They can often typically be very bright and very creative and very sensitive and very environmentally sensitive. So I try to respect what their goals are and what they want to do, but help guide them to a level of readiness to re-engage and say, The home needs to belong to you, not to your stuff. We've got to transition that a little bit.

SPEAKER_01 26:13

Now, Ann, we have a couple minutes left, but I'd be remiss if I didn't ask you this. How did you get so interested in hoarding disorder?

SPEAKER_02 26:25

Well, I think because most of my life work as a social worker and a care manager has been working with people on home visits and I would go to do a home visit for whatever reason and then be faced with this level of surprise walking into the home. And coming from a social work perspective, I also quickly learned that things are not easily remediated. You have to learn how to work with people. And back when I started, it was not a psychiatric disorder. So everybody just thought it was something that with a little elbow grease could be fixed by somebody. But hoarding disorder has close to 100% recidivism rate. There needs to be a plan to be able to help them get a safe, functional space. But then there has to be some sort of oversight to be able to keep tabs on it because the likelihood is that things will start to build up and come in. But trying to see whether people will be encouraged to participate in talk therapy or peer support groups or having somebody come in like me to be able to do some peer training with them or working with organizational professionals. Try to get something so that it's sustainable.

SPEAKER_01 27:57

And how could folks get in touch with you?

SPEAKER_02 28:00

Well, the best way would be through my email, which is info at agingremix.gmail.com.

SPEAKER_01 28:11

And thank you so much for being on our show today. For all of you out there, you just learned the knee-jerk reaction should not be that my loved one has a hoarding disorder. There are It's a whole spectrum on why things accumulate in the home. So it's always good to rely on the expert advice of someone like Anne to really help navigate the passage that you're about to take and the loved one is willing to take to make sure that they can build a safe environment and age their implant. If you missed any part of this show, just log on to our website at eldercareontheair.com. And I look forward to talking to you all next week. Be well and be safe.

SPEAKER_00 29:04

Amoruso and Amoruso LLP and Rye assists clients with comprehensive estate planning and vital asset preservation tools that reduce financial risks of long-term care. Amoruso and Amoruso, a 107.1 The Peak Ask the Expert partner. Visit eldercareontheair.com for more details.