"Chandeliers Don't Give Hugs" with Nickie Difede — Full Episode Transcript

Do things early when you still have options and you can look and age gracefully into those locations.

When caregiving feels overwhelming and the system feels impossible to navigate, this is your guide. Here, you'll learn ways to navigate long-term care planning, find real support for caregiving, and prepare you for the road ahead. I'm your host, Lindsay Friedman, and now you're not in this alone. Let's get started.

Welcome back to another episode of LTCareNav's Care Compass. I'm your host, Lindsay Friedman, and today we're here with Nickie Difede from CarePatrol of Broward County. And we are so excited to have you here today, Nickie.

I'm excited to be here. Thank you, Lindsay.

So I always start kind of the same way, because we're serving such a vulnerable community, and I always love to know why people have chosen to serve here. So what do you do, why do you do it, and who are you?

Absolutely. Well, thank you. First of all, Nickie Difede, owner of CarePatrol of Broward. What I do is I help families navigate the often really complicated world of senior living. So I help families find assisted living, independent living, memory care, even in-home care if that's what they need.

My why is really personal and I'm really passionate about it. Years ago I found myself in a position where my dad was very sick and he needed care, and we didn't know what Medicare paid for, what his insurance could provide, what his options were. He was a veteran — certainly he was entitled to something. I made a couple of phone calls and realized that no one knew what they were talking about.

After his passing, I had a thought that there needs to be a better way. CarePatrol was presented to me and I thought, this is what I'm supposed to do. I am supposed to help people navigate this world so that if someone calls me, they have educated answers as to what to do. So I've decided to be the subject matter expert in Broward County in all things senior.

And I absolutely love that. One of the things is that you have 20 years in the healthcare industry prior to CarePatrol, and you still ran into this. So why do you think even experts in healthcare are still at such a loss at how to navigate long-term care?

Yeah, that's a really good question. I think that there's a lot of misinformation out there. There's a lot of big box advertising that goes on, and you think that's a one-stop shop that can figure out your problems.

What it all boils down to is having some boots on the ground, local people who know the culture, know the community, and know what the resources are that are out there. Because I can't talk to someone from Wyoming and expect them to understand South Florida. We're a very different market for a lot of reasons. And unless you live and breathe in this market, then you don't know what the right answers are or who to go to or who the resources are.

I think that's so important, because there are a lot of places online where you're not getting that local area expertise. And not having that is really going to change how people do this. One of the things that you do that's so beautiful — if you could talk a little bit about it — is when you work with a family, you're very hands on. So what does that even look like?

Yeah. So we always start with — obviously a family will call us or they'll be referred to us — and we're going to schedule a meeting. So I go over, get to meet mom, dad, whoever needs the care. Typically the phone calls I get are from the children, the adult children of parents who need assistance. I say bring the whole family. Have everyone come in. Let's have all our questions answered. And if we can't do it in person, then I get them on a Zoom call at seven o'clock at night, get everyone on a call so we can dispel any misnomers that you have about what senior living could be and what the options are.

But I do meet them in person, meet them where they're at, get to know them. Number one and most importantly, what care do they need? What are we looking at? Secondly, what's important to you culturally? Because again, we live in South Florida, and there are certain aspects of our community where they might want a Spanish-speaking caregiver because that's what mom would prefer and would make her comfortable. Those things are important to my clients.

So I really hone in on that and understand them, their care needs, what's important to them, who they were as individuals, what their careers were, what they did, what makes them happy. And then of course, budget — because there's not a single community in Broward where I could say, hey, right there, that's going to be great for everyone. It's not.

You know, chandeliers don't give hugs. You can't walk in and say, that's a great chandelier, this is beautiful, look at the marble. But wait — what does the care look like? What does your mom really need? Is this overwhelming for her? So understanding care, what type of community is needed, and then of course budget so we can work within the budget.

And then if they're still short or they still need resources, helping them understand what different resources are out there — whether it be VA Aid and Attendance if they're a veteran, or Medicaid long-term care because they just can't make the numbers work — and what that may look like, connecting them with elder law attorneys who can help them through this process. So again, putting all the pieces of the puzzle together. I have my vetted resources that I know I can trust to help older adults so they're not going to be taken advantage of. That's something that's very, very important to me.

So I go, I meet them in person, we talk about different communities, they decide on a couple of communities, I say okay, let's go. I schedule the tours. We go out there touring these communities. I ask them for immediate feedback. And then we sit down and have a chat. Okay, what did you like about this community? What did you not like? There's another option out there — let's talk about that.

And so we're really hands-on. Even after they've decided to move into a location, I'm still there. I'm calling them the day after moving. I'm checking in with them on a regular basis. As I'm out in the community, I'm stopping by, making sure that they're okay and that everything that was promised to them is given. Because that's what some people are leery about — I'm promised the world. We're going to make sure that the care you were promised is the care that you're receiving. And that's by me doing those check-ins with the family or with the loved one themselves, going out there and seeing how they're doing. Are they happy?

I love that, because it isn't just, here, you're where I put you and it's done. You really are full service — you become part of the family. And I think that's what a lot of people are looking for: knowing that at any point in time there's guidance. If mom is unhappy a year down the road, they can come back to you, and no online service is ever going to replace what you can do there. I love that you take that responsibility for a family and you care so deeply.

You said so much, so I want to unpack some of it. One of the things was that there are a lot of misconceptions about what senior living is. So when a family comes to you, what is the overarching thing they're thinking they're getting into? Especially when we hear, mom always made me promise, don't put her anywhere. Why are those kinds of thoughts of the past and not of today?

Right. So I think a lot of us — even myself, before I got into this, before I was exploring this — my great-grandparents were in nursing homes or assisted living. And I remember there was a good side of assisted living and a bad side. I was eight years old at the time. So even me, being in my 50s, I had that idea before I went out and actually toured locations.

So when people think home, they think nursing home. They think four people in a room, nurses in white coats walking up and down the hallways, and food being shoved in your mouth. That's what they think is happening. That's not what assisted living is. So we dispel that. Assisted living is a country club — we like to say down here, because it's so relatable, a cruise ship on land. Like, I'd like to live here.

You're getting the three meals a day, but you're not being shoved food. You're offered a menu. You have a waiter or a waitress assisting you with making these decisions. You have very specific meals developed for you. You're voting on the menus that you would like. You have input.

When you're in assisted living, there's a resident committee that talks about activities they want to do, and what they don't like about the menu. The biggest complaint about most assisted living is the menu — they're always complaining about food, anywhere you go. So you have committees talking about what we want to bring in, and the chefs are making a menu that's going to fit those needs. So it's really a lifestyle that we're looking for.

And I tell my older adults that we're looking for dignity, number one. We don't want to broadcast to the world that you need help. You need help behind the closed doors of your own individual apartment. No one needs to know that you can't bend down to put on your socks, or that you need someone to hand you the shampoo while you're showering.

So it's the dignity. Your apartment door is closed. You have scheduled help when needed. Maybe you're forgetful about medication — medications are brought to you as prescribed, as you need. So it's preserving the dignity. Then you get to walk out your apartment door and you're Mr. John Smith again, and you're going to happy hours, you're going to dinners with your friends, you're going out in Broward County to a theater to watch a show at the Broward Center for the Performing Arts.

So I always tell people, what are you gaining? You're living your best life. Isolation is a big problem for a lot of older adults. I just had a conversation — one of my clients called me at 10 o'clock last night. I gave him a list, broke down all the things, all the questions that he had, and I knew he needed to review it. At 10:05 he calls me up: Nickie, I have a question. They're lonely. They're perseverating on what that move can look like.

In my case, my gentleman has been in his home for over 40 years. I can't underestimate the fact that this is a huge move for him. Now, I assure him that he has all the parts needed to make this move. Financially, he's done really well for himself. But internally, his thought is, this is not the way it's supposed to be. My children should be coming in, moving with me, taking care of me. It's not the way it is. And that's a hard pill for a lot of older adults to swallow.

So I try to say, look, here's a location that's still close to home. You won't have to change your doctors. Give them all the positives. Besides that, you're not going to be lonely anymore. You can still go to the Hard Rock Casino if you want. There's no stopping you. There are no curfews in assisted living. So understand that they can have the best life possible, but care preserves the dignity behind closed doors, and they can really live whatever remains of their life in a way that matters.

That makes sense — that has purpose. You're building friendships, you're joining new clubs, you're really doing things that matter in life instead of being alone in a three-thousand-square-foot home thinking about everything that's wronged you for the past eighty years.

And I think what you just said is, it's a lifestyle. You're not moving into a hospital that's locking the doors on you. It's a lifestyle. It becomes your home with all of these amenities that I would like to have right now. I want someone to make me dinner and then come serve it to me and clean it up.

Clean your room up, do your laundry. Yes.

I've told my husband, I'm going to assisted living. This is my end goal for sure, because I've been through so many beautiful places. And I really wish our older adults would just tour, because sometimes you can see it and you get over that fear of leaving your house. There's so much more.

And one of the things you did mention is the chandelier thing — there are some absolutely beautiful assisted livings that don't even compare. They're more than what I live in, and more than most people. But you said don't pick from that. So what does that mean when you are touring? What else do you have to look at besides the beautiful carpeting and flooring?

Yeah, so number one is care. The number one thing when I go on tours is, would I want my loved one to move here? Would I want my mom to move here? So I look at the small things. I look at the caregivers we're passing by on the tour — are they acknowledging you? Are they on their phones the whole time? Or are they lifting their heads up: hi, good morning, welcome to our community.

The residents — do they look happy? Do the residents have stained clothes on? Do you see them just in a wheelchair unable to move? Do they need assistance and no one's taking care of them? Oftentimes residents remember me, because I've been touring a lot: hey Nickie, how are you? So I'm stopping to say hi, but I'm also telling the family I'm with, look at them. Are their nails clean? Do they look like they've showered recently? These are things that should be important for your loved one. Are they being taken care of? Because this is not a dumping situation.

This is not a situation where you're dumping them and whatever happens, happens. No. You're paying for care and care should be given. So it's important to look — forget about the chandeliers, forget about the marble, forget about the fountains. Look at the residents. Do they genuinely look happy? Do they look well cared for?

And you can have a conversation with them. I always tell my families, stop and say hi. Ask them how they like the community. There's no harm in that. No sales director can say, don't talk to my residents here. Ask them — they should be proud. And sometimes you'll get, I didn't like breakfast this morning, my eggs were a little runny. Okay, we understand that. But if you witness someone who fell and no one's attending to them, that's a big red flag. There are no excuses when it comes to older adults and the care that we expect. So if you go in and see something you don't like, we can turn back around and go out.

So I always tell them, besides using your eyes to look around and talking to people — what do you smell? Assisted living should not have smells. Nursing homes shouldn't either, but that's a separate story. In assisted living, it should not smell heavily perfumed. It should just smell like you're walking through anyone's house. So you want to make sure that you don't smell urine.

Sometimes I walk into an assisted living and I see fabric couches and I think, gosh, because as we get older incontinence might happen. Don't have the fabric couches in the hallways. But those are the types of things I'm looking for, and that I'm telling my families to look for — to see, to smell, to use all your senses to see what's going on. But ultimately it comes down to a gut feeling. Do you feel like this is a nurturing, caring environment, one that your loved one could thrive in?

And that is different for a lot of people. Oftentimes it's cultural. Do I hear the same language that my parents speak? Do I smell the same foods that they enjoy? Do I smell those foods cooking? That's a huge comfort to a lot of older adults, especially those with dementia — because they might remember living in Jamaica back in the day and having their peas and rice, or living in Cuba. When we have dementia, we're going back a couple of decades.

So those are comforting things. Hearing the accents of where they came from is probably one of the strongest and most requested things I get. My mom is from this country — can you help her find people who can relate to her? Absolutely, 100% I can.

I absolutely love that. And again, that's something that you only get from your advisor when they are living in your community and knowing these communities so intimately. Those are things I wouldn't have even thought of from my demographic.

So when you have a family coming in and there are different care levels — because you mentioned what kind of care they're going to be given in Florida — is there a point where assisted living isn't an option? What can families do when they're looking at escalated care?

Great question, and those are questions I get quite often. Sometimes families don't know the difference between nursing home criteria and assisted living. Assisted living is really simple: you have to be able to stand, bear weight, and pivot. You can do that with assistance. You can have someone under both of your arms. You can have a walker. You don't have to walk 80 feet, but you have to be able to meet the bare minimum — stand, bear weight, pivot, and then you can sit into a wheelchair.

You cannot have any type of mechanical devices. You can't have a Hoyer lift in assisted living. So if your loved one needs help getting out of bed by a Hoyer lift to move them into a wheelchair, that's nursing home. And then the other big one, and the really sad one, is you can't have beyond a stage two wound or ulcer. So in the state of Florida, if you suffer from bed sores — sores that are so bad that they're now to the muscle or to the bone — that's really nursing home level care.

So those are the two biggest criteria. If you're really bedbound and you have wounds, you are looking at a nursing home. Now, something that I try to tell a lot of my families is that you can go into assisted living being able to stand, bear weight, and pivot, and then as you're aging, you can age in place.

You might not be able to stand up any longer. Guess what? You're not going to get kicked out of assisted living. Again, that's a myth. You can bring hospice in and now you can age in place in that assisted living. So you never have to go anywhere. You can truly age in place — but you can't come in there being bedbound. You bring in the hospice services, and now you can live out the remaining time of your life in assisted living.

It's also really important to know that in Florida we have our standard assisted living license, and we have ECC and LNS licensing, which requires a nurse on staff 24/7. That's a higher level of care. And then we also have an LMH, or limited mental health license. So those people who have schizophrenia or bipolar disorder, they're not nursing home candidates — they just need to find an assisted living that is going to meet them where they're at, and that might be an LMH license. So it's important to understand those different licenses.

Also, one of the big things, Lindsay, that I get is: my mom has dementia, she needs memory care. Stop, time out. A diagnosis of dementia doesn't mean you need memory care that moment. What it means is that I should help you find a location that has assisted living and memory care on site. So if mom or dad gets to the point where maybe they can't feed themselves, maybe they just can't remember to go down for breakfast or lunch, we might be looking at memory care for that.

But I have many clients who have a dementia diagnosis and they're what we call pleasantly confused. They might need medication reminders because they need to take their medications — maybe they have Parkinson's and that medication is really important. You're going to get that. But they can remember, they can still be safe living in an independent apartment. When they're unsafe and they're an elopement risk, always trying to exit seek, then we need to look at memory care.

But I say, let's talk about what assisted living looks like and how that could be a safe option — remembering that most of my assisted livings don't have ovens or stoves or anything that's going to contribute to them putting themselves in a harmful situation. So again, it goes back to really knowing what the person needs, where they're at, and giving them the best opportunity for a full life.

And I think that's so great. The whole moral of your story for families listening is: don't wait. If you see that mom or dad is starting to age — am I correct in this? — looking at assisted living earlier, letting them get oriented, letting them find their new life, and as they age they can now stay in the same location. Especially in dementia cases, do you find that typically makes them feel at home and that they're not so disoriented?

Absolutely. That's the best idea. The first step is, let's really take a look and dive into what assisted living looks like. Because the first thing they do is walk in and go, wow. I'm like, look, there's a courtyard, there's a dog walking area out there. You can bring your dog. That's another thing — people think they can't bring their animals. Yes, you can bring your dog or cat into most assisted livings.

So showing them what it looks like. I'll go back to my gentleman friend who called me at 10 o'clock last night. He has over a 3,000-square-foot house, living there by himself with a pool, pool maintenance, lawn maintenance. I'm like, you can save $4,000 a month, live in an environment, and do everything that you want to do. He likes to go out to lunch every day — bring your car. You bring your car to assisted living. Do all these things and have the best quality of life.

What I worry about for my gentleman friend is that he may wait too long. God forbid he has a fall. God forbid he has a rehab stay and now he's bedbound. Now what? Now you've made the decision for yourself. Now we don't have options. So I'm saying, do things early when you still have options and you can age gracefully into those locations.

Many assisted livings have the trifecta of independent living, assisted living, and memory care. And some of the assisted living and independent living apartments are dual licensed, meaning even if you go from independent living to assisted living, you still stay in your same apartment. You're never leaving your apartment. So it's important to know those things. And again, that's why someone like myself, or anyone really from CarePatrol, we are those boots on the ground walking into these locations, touring with them, and really being your hands-on person.

In fact, the other day I was eating lunch and I had a random call and I happened to pick it up.

And it was a sales director from a community that I hadn't been to in a year, quite frankly, because their care wasn't good. Their care violation history was really poor. And he called me up and said, Nickie, I'm out here now, I need you to come see us. Give me some clients. I said, wait a second, John. I can't just send you clients. I've got to see you. I MapQuest it — I'm like, you're nine minutes from me, I'm going to bring my butt out there right now. Let's go tour.

So we went and we toured and we talked about the previous administration, why there were care violations, and what they did to change that. So now I can advise my families: look, there's a new director of nursing on staff, there's a new executive director, she's a nurse herself, and there's a new sales director. This is what the community has done. They've changed names, they have new ownership.

And as a matter of fact, that community I hadn't visited in a year — they own about eight ALFs in the state of Florida. The owner, the CEO of all that, was out there mopping the floor. And I got to meeting him and I'm like, wait, you're the owner? He goes, yeah, because you've got to sometimes get down and do the hard stuff. I like that, because I like making those connections, knowing that he has that level of involvement. If it matters to him that his floors are clean and he's the owner of all of this, then hey, maybe I need to give this one a second look. Maybe they are doing something right.

But again, it takes me going out there to see it, to talk to the residents, to do the tour. I was very pleasantly surprised at what I saw. And those are the important things that I can now relay to my families.

I absolutely love that. Your involvement and your passion — it's so clear how it comes through. And to families listening: one, if you're in Broward County, find Nickie. If not, there are other CarePatrols across the country. You guys are all so passionate. And hopefully families really get the idea that you need to have a person. Let your advisor be your person who takes you through the whole journey. Do you have any final words?

Final words: if you need to find me in Broward County, it's again Nickie Difede — that's D-I-F-E-D-E. If you can't remember that, just remember CarePatrol. You can put it into your web browser, enter in your zip code, and it's going to connect you with the closest CarePatrol to you.

The great thing about CarePatrol, Lindsay, is that I know the owners, we all have the same level of passion, commitment, and mission. We really do care. This is not just a paycheck for us. In fact, if you talk to any of us, half of what we do is pro bono. We're giving advice, we're advising people on what to do. And that would be my parting words — connect with CarePatrol for really quality, boots-on-the-ground senior care advising.

And I second that, and we'll make sure that's in the show notes. So thank you so much for joining us today.

That's a wrap for today. Until next time, remember: you're not alone. Take things one step at a time, stay centered, and trust your compass. See you next time on LTCareNav's Care Compass.