The Invisible Patient with Annalee Kruger

Join Kosta and his guest: Annalee Kruger, Founder and President of Care Right Inc., Senior Care Advisor, Author of The Invisible Patient, and senior care director of over 30 years.

In this episode: Today’s episode revolves heavily around the concept of compassion fatigue - or the burnout caregivers experience due to chronic self-sacrifice. How does this normally manifest for caregivers, and what should we be on the lookout for? A lot of our listeners are navigating their roles as long-distance caregivers, similar to what you're experiencing with your own parents. What unique challenges does this situation pose and do you have any advice for anyone in the same boat? What tips can you offer to our listeners on setting boundaries in caregiving without feeling guilty?
 
Find out more about Annalee Kruger and Care Right Inc.:
https://carerightinc.com/

Find out more about Kosta Yepifantsev:
https://kostayepifantsev.com/

 

Transcript

Annalee Kruger: 0:05

I always ask how many of you are family caregivers right out of the red out of the gate? And you might get like a few hands like, Oh yeah, I'm here. But then as I talked about what a caregiver actually is, and then I asked again, then like all these hands like shoot up and you're like, oh my gosh, I am doing all of that. That's a caregiver. I just thought I was helping.

Caroline Moore: 0:22

Welcome to Now or Never Long-Term Care Strategy making. themselves. with Kosta Yepifantsev a podcast for all those seeking answers and solutions in the long term care space. This podcast is designed to create resources, start conversations and bring awareness to the industry that will inevitably impact all Americans. Here's your host Kosta Yepifantsev.

Kosta Yepifantsev: 0:45

Hey ya'll it's Kosta. Today, I'm here with my guest, Annalee Krueger, founder and president of care riping, senior care advisor, author of the invisible patient, and working in a long term care industry with seniors and families for over 30 years. And elite like so many of us your introduction is senior caregiving happened at home, will you tell us about growing up watching your parents care for your grandparents and how that shaped your career?

Annalee Kruger: 1:11

Sure. So I'm 51. And so back when I was growing up in the 70s, we didn't have all these different levels of care for our grandparents. And so if they weren't able to manage at home on their own, they did one of two things, they either moved in with their kids, because there wasn't any other option other than a nursing home. And nobody wanted to do that. Right. So so our whole family actually took care of our grandparents. It wasn't just mom and dad, it was like, as a little girl, I'm helping bathe my grandmother, I'm putting the powder on her and I'm getting her dressed and putting on her sandals. And, you know, with my grandfather, he he didn't need hands on care, but he needed the socialization, because he was right. I'm a farm kid. So he was riding horses with us, he's feeding the cows, and he's on the combine with us, you know, so he just needed the activity and the structure and the and the companionship of family. So, but I saw just how how hard it was to meet their needs. Because especially with my grandmother, her she was very chronically sick. And so it was just, you know, it was just a lot of just a lot of work to take care of her. And then shortly after, like a year after my grandmother who, who needed the most care, moved in my oldest sister went missing. In college, she, she became a missing person. And so on the weekends, my dad and my brother would drive to Nebraska to try to find her. And so then my mom and the rest of my siblings would manage the farm and take care of the grandparents. So I saw that how, how, like, life just unfolds like life has its own agenda. And we're constantly getting thrown curveballs. And when you're a family caregiver, that that dedicates a lot of time and energy. But it also all these other things in life happen. And you can't just like, Okay, well, you're on your own Grandma, you know. So I saw how just life happens. And we're always thrown curveballs. And we had a family crisis. But we still, we still honored our promise, we were one of the families that made the promise that we'll take care of you. And we did, but it wasn't always easy. So. So that's what led me into working in social work. And I knew when I was nine years old, because this was all kind of unfolding when I was nine. And I was like, I just I know that this is how I want to help families because we can't possibly be the only family that this is happening to. And boy, was I correct? Because now fast forward, we're in the silver tsunami.

Kosta Yepifantsev: 3:53

Absolutely. And I mean, one of the things that I talk about often is how we've shifted from this multi generational family unit where you took care of your parents that your parents moved in with you and a lot of cultures still do that. But like, as you talk to families, and you reference back to your own experiences, what what do you think has changed in our society that's prevented people from taking on the responsibility like you and your family did?

Annalee Kruger: 4:24

A lot has changed in our society. Number one, it seems like in my opinion, in my opinion, when I first started out working in long term care, I started out as a social worker and admissions coordinator. Then I moved up into executive director roles into CCRCs continuing care retirement communities, but part of that job when I was an employee, so it was a job a part of that job was always to do the tours. The tours, were almost always with the adult kids, because mom or dad was in the hospital so there's no way they're coming. out to tour, right? And then the hospital will say, here's a list of facilities go find one by noon tomorrow because we're discharging. Well, it just seems like back in the 90s. When I was starting out as a new social worker, it just families lived down the street from each other, they lived in the same zip code, or at least in the same time zone, right. And so there was that kind of family cohesiveness and everybody just pitched in just like farm kids, we all just pitched in, because that was for the greater good of the family, right. But in time, by the time I left corporate America and started my own company, and 2011 families don't live near each other. It's rare that even as a family consultant, that we have a family that the nuclear family is all in the same state, like same timezone. So I think what's what's shifted is this, the profile of the typical family, you know, they have to move away because they get married, or they jobs, they have to follow the job. Or maybe their family dynamics were such that they're like, I don't want to stay in my hometown, or I don't want to stay so close to mom and dad, the relationships not great. So between the economy and the family relationships. And I say that just because as a family consultant, 92% of my clients come to me in crisis, because there's been some terrible thing that has happened, or the family is kind of woke up and realized, Oh, dad is more demented than we thought we need to probably do something and yes, you're you do. But also, there's just so much, there's just so much denial, you know, with with families thinking that their parents are doing better than they are. And so when you layer on all those kind of opinions or perspectives, with adult children, about their parents, then there's those relationship rifts as well. And it seems like, in my opinion, when families started moving away from each other, if they didn't invest the time, the effort, the energy and the resources and maintaining those relationships with each other as siblings, and with parents, then when there's that medical crisis, Dad falls and breaks his hip, or mom dies unexpectedly, and she's the caregiver to dad, then they have to get reacquainted as siblings and as a family. The other contributing factor is employers in my opinion, aren't as family, the culture isn't as family oriented as as it used to be, like, when my dad was, was working and taking and we were all taken care of his dad, my grandfather, his boss would say, you know, take whatever time you need, you know, family comes first. You don't hear that anymore. Oh, yeah. So and you know, and your colleagues are like, well, if you're going to be gone for another two weeks, because you have to fly to Arizona, because Dad fell again, you know, even colleagues are saying, Look, you know, I I can't keep carrying your weight for you when you're gone. So those are, those are some those are, in my opinion, just the the shift that I've seen, and then just, you know, people, employees only get two to four weeks of vacation, and they're certainly not going to spend every PTO day checking in on aging parents, and then you've got blended families or you know, dad lives in Tucson, but mom lives in Fort Myers. And you know, there's only so many vacation days that you get.

Kosta Yepifantsev: 8:15

And it's interesting that because everything that you've said, has come up in a lot of the episodes that we've talked to people who have acted as primary caregivers who have since transitioned to a, you know, whether it's building their own company or helping other families or managing a support group online. That's exactly what they talk about. It's about putting their life on hold. It's about moving across the country. It's about having to essentially change the direction of their lives to be closer to an assisted living facility that their parents are living in. And you know, it, it always brings up in my mind how many families aren't doing that. And they have to rely on the long term care system, which is, generally compartmentalize. So, you know, whether you're a spouse or a family member, child, whatever it might be, and you're caring for an individual day in and day out, you know, burnout is obviously going to happen and today's episode revolves heavily around the concept of compassion fatigue, or the burnout that caregivers experience due to the chronic self sacrifice. How does this normally manifest for caregivers and what should we be on the lookout for?

Annalee Kruger: 9:37

Sure. So let's let's back up a bit first, so because I do a lot of speaking, I just did one. I did three of them yesterday, there were live webinars, and there were total for the day, probably 450 people. Oh, total webinars, right. And so the converted into podcasts, but anyway, I always ask how many of you are family care? givers right out of the great out of the gate. And you might get like a few hands like, Oh yeah, I'm a kid. But then as I talked about what a caregiver actually is, and then I ask again, then like all these hands like shoot up, and they're like, oh my gosh, I am doing all of that. That's a caregiver. I just thought I was helping. So, so let's talk about what a family caregiver is. And I'm sure that your listeners will be like, oh, gosh, that is me. And I need to I need to figure out what a plan looks like so that I don't get burned out because it is preventable. caregiver burnout is preventable, if we have enough supports in place if we're educated about what the disease is that our loved one has. And we have an actual aging plan, which is what we do at care, right? We do aging planning. So caregiving is tasks that you do and time that you're spending on your aging loved one or the person that you're the care recipient is not always aging loved ones, because we do special needs planning as well. But it's tasks that you're spending time unpaid doing. So it could be you know, going to go pick up the mail, because mom's driveway is too steep, and you don't want her to tumble down, right? So it could be going to pick up the mail, it could be Well, mom needs groceries, so I have to go to the store. So I might as well pick hers up, could be doing laundry housekeeping, setting up medications, coordinating doctor's appointments and therapy appointments, taking time off work to drive them to their doctor's appointments, because you can't trust that mom is going to relay the messages back to you about what's what transpired during that doctor's appointment. It's calling insurance companies, it's going to the bank, it's paying bills, it's talking to the financial planner, it's talking to the estate attorney, it's signing documents, it's money, managing their money, making sure that their bills are getting paid to all of those things. That sounds like a full time job. And then you got Oh, now mom needs help in the bathroom and bathing and dressing, grooming and not Mom's got dementia. So if I'm not there in the afternoon, she's likely to wander out, you know, so. So it's all of those things. And we talk about or I talk about the caregiver snowball. It sounds like we as kids, we just think we're all these heroes, right? Like, we're like, yeah, we got this we can sure we, we can do this. And it starts out feeling manageable. And then in time, whatever happens, but in time dementia progresses, Dad has another fall, they move in with you and you don't like their cat. And you're like, oh my gosh, what have we done? I'm so not joking about that. Is that a big relationship breaker?

Kosta Yepifantsev: 12:39

Pets in general, though,

Annalee Kruger: 12:42

relationship breaker and I have

Kosta Yepifantsev: 12:45

I have had certain individuals who are in complete crisis. I mean, they know they are living in unsafe conditions. And we have a no pets policy. Because a lot of times it'll just end up the caregiver will end up spending more time taking care of the pet than it is than the individual at times, of course, and people will forego the service. So they remain in their environment because of their pet. And it's I mean, you know, I don't I don't know every how they think I'm not inside their minds. And you know, maybe it's they consider it like children, so I totally get it. And cats cats are a big one.

Annalee Kruger: 13:26

A big one only because they climb on counters and you know, anyway, so yeah, pets can be a challenge. But But anyway, so caregiving starts out feeling manageable until it's not until you're like, oh my gosh, now I'm spending 10 hours a week now I'm spending 20 hours a week and now I'm spending, you know, all this money out of pocket. So for example, my care right clients, I asked them, How much money are you spending out of pocket just because again, families are darting across the country every time mom falls. So it's not like they're always just right down the block from mom. And so the typical my typical family is spending$15,000 In airfare alone the year prior to engaging with us on a comprehensive aging plan. Because when dad lives in Arizona and you live in New York, and he falls again and you get that crisis call airfares, not $69 on a legion, it's like$1,000 at a pop. And they tend to you know, sometimes they tend to get a one way ticket because they're like, what, I don't know how long I'm going to be gone this time. You know, and then spouses you know, their spouse is like look, the first couple three grand was when was one thing but now it's like 1015 grand a year like this isn't sustainable for us. So we talked about the financial tool of family caregiving as well. And so that's why Unfortunately, by the time families come to us to talk about an aging plan, their relationships are really burned out at home because the spouse is like you're not even emotionally present for Are us in your own family anymore. And you're like, I love your parents, but you got to figure this stuff out. They're stressed out because of their employers and colleagues saying, Look, you know, we got to have you here, dude. Like, if you're not selling and meeting your sales quota, you're not going to have a job. So there's all this like other stressors in that trickle, because of family caregiving and family caregiving can derail your your relationships, your emotional well being your physical well being your safety, and your finances all across the board. And so we want to, we want to educate family caregivers, that aging and caregiving can be a positive experience, when you have an aging plan, you know, we, we spend our whole life planning for all these other things, you know, oh, I want to go to this college. So I need to do these classes, get these grades, do this type of volunteer work to be able to get into this college, oh, I want to do this as a, as an occupation. This is the type of college I need to go to. And this is what I need to do that this is the other training and certificate. If you want to go on vacations, people spend 20 hours just planning the vacation. But so why why wouldn't we leave our most dependent, vulnerable population? Why would we be willy nilly about that when they are when they become so at the mercy of health care workers and family to take care of them. That's That's why families fail, and they fall through the cracks. Because, you know, the health care system will say, Oh, you have Parkinson's, good luck to you. And then that's that's kind of it, you know, and that's why that's why that's why curate fills the gap, you know, to go I working with a new fan, you know, a new family. And, you know, their mom had Parkinson's for five years, she's had that diagnosis for five years. And when the daughter called me, because she's like, had mumps falling all the time. And she was I'm just, I just can't do this anymore. You know, I hurt my back trying to pick her up the last time and I said, Well, you know, so I laid out what Parkinson's really means. And falls are a hallmark of that disease. And it can be a dementing illness. So I walked her through well as your mom, you know, I have a memory impairment checklist. And she's like, Yeah, she's doing all that stuff. And five years of that diagnosis in the family, you know, family had no idea. So shame on the healthcare industry for allowing these families to fall through the cracks. But that's why we talk about with the aging plan, we have to educate our families that we're working with, because they don't know or they'll say, if dad's dementia progresses, so that tells me that no one's done their homework, right. And so that's why with our clients, it's so much almost curriculum based because they're coming to us so naive and misinformed. They'll say Medicare and Medicaid in the same sentence as if it's the same program. They'll say, if dad's dementia progresses, they'll say assisted living and nursing home in the same sentence as if it's the same type of care, and it's not at all. So we have to really start at Ground Zero and just really educate them about aging and dementia and caregiving.

Kosta Yepifantsev: 18:14

Well, and to prevent that burnout, the best solution, in your opinion, is to have an aging plan, and to start doing education and research. So as we're talking, it's bringing up a few things to mind, because from the healthcare industry perspective, they're not doing a good job of educating individuals. But more importantly, when you're talking about preparation, whether it's college or a career, how many people prepare for retirement, and estate planners, and retirement experts. I just had a conversation last week with somebody who's a very prominent real estate planning in our community. And he doesn't even recognize the necessity for having a conversation for long term care nor preparing for it and his rebuttal. And I want to hear what you have to say about this is that they don't need a state planning, because they have the financial means to be able to afford long term care and they'll be just fine. I know. I was like, Oh, okay. And his client base is getting older and older. He may not be he may not have you know, they may be in their late 50s, early 60s. They're not quite there where they need this, this this hands on and wraparound services. But when you talk to people you say 92% of your individuals come to you in crisis, which means that they've spent a substantial amount of money and they've also reached the end of their rope. They may very well be at that burnout stage. They are at that burnout stage and when you see all of the people that are supposed to help helped them along the way, sort of dropped the ball over and over and over again. I mean, how, specifically speaking to estate planner and retirement experts, I'm curious your thoughts as to why they don't have a more thoughtful conversation about planning for long term care.

Annalee Kruger: 20:15

So that is that is an entirely other podcasts because I have a whole lot of stuff I have to say about that. But I'll just give you a breakdown in a couple of things. Okay. All right, so. So I truly believe that if we want to be successful in life for anything, we have to put a plan together, how you can't be willy nilly about everything in life. There's some people who skate through life doing that. And that's cool. If it works out for you, but usually does not. When we're talking about because I built a whole nother company, I have care, right. But I also have planned for life because of the financial planning industry, ignoring the needs of their clients not addressing caregiving and the impact of caregiving on the financial portfolio and assets under management, not using that collaborative approach and referring them to attorneys to make sure that they have their living wills, power of attorney, all that stuff buttoned up, because all of those things litigation and, you know, premature hospitalizations all affect the premature facility placement all impacts negatively the assets under management portfolio, elder planning attorneys, if they fall into that same clump, you know, of every I just can't believe that an elder law attorney doesn't see the value in proactive planning. And here's because when we say estate, estate planning, we're talking to living wills and power of attorney and the HIPAA documents are included in that, right. We're not just talking to trust and stuff like that. So just so that your your listeners are educated on what that means. So, so when we're talking about a family who doesn't have, let me give you an example. Recently, I worked with a family that I talked to them about seven months ago for their 30 minute consult to see if they wanted to work together to put a plan in place. I said you're already in crisis. They had their mom on Zoom. She's in her 80s She looked exhausted are ready. She's been taking care of the dad with dementia. He's wandering, he's got his days and nights mixed up all that kind of stuff. And I'm like, we have to safeguard your mom, because we know that the primary caregiver over age 60 has a 65% mortality rate. Fast forward seven months, it didn't want to engage in services because it costs money. There's like, pay now or pay later. So they call him on a Saturday morning at 7am. And here's where this is important. Because no one calls me at 7am on a Saturday with good news. So So what happened is the four kids live in four different states parents live in a totally different state. And so the kids are like, hey, you know, I tried to get a hold of mom all week. Have you gotten a hold of her? No, no, no. So the closest daughter lives the six hour drive away. So she hops in the car and drives and lo and behold, she knocks on the door of mom and dad's house. Dad opens the door. He doesn't recognize her because he's that progressed with dementia. And she's like, Oh, my gosh, what is going on? So first of all, she's hit with dad doesn't recognize me, you know? Because she's like, Oh, when did that start happening? And she looks around the places trash BM everywhere all over the furniture. Mom is dead on the kitchen floor. Oh, God. The dad is too demented to call 911. He doesn't know how to use the phone. Mom was the primary caregiver. She made sure he ate properly had his meds was bathed dressed groom toileted, clean. mom's dead on the kitchen floor for a period of time, right? And so this daughter who's like, first she gets hit by dad not understood not knowing who she is the place is trashed. mom's dead on the kitchen floor. So here's, here's why estate planning is important. Because then of course, now they see the value of working with us, right. But now we're doing crisis planning, which is different rates. Because now it's also Saturday. And so here's why estate planning is important. So I'm asking them and of course, this is why I tried to get families to plan ahead because then we have the luxury of time and emotions aren't so heavy. So now we're working now in working with this family. And I'm like, Okay, what because dad obviously can't stay home by himself. Does he have a living will a power of attorney and HIPAA documents? No, I can't I don't know where any of that stuff is. We've never talked about this kind of stuff. So obviously dad is not decisional so now they have in their state. The attorney quoted on it was gonna be like 18,000 to get emergency guardianship. Why? Because they didn't have their estate documents in order. And I'm like, Okay, who are your parents financial planner? I don't know. We've never met this person. We've never Talk to them. We don't know where their accounts are because mom and dad took care of all of that, or mom took care of all of that. And so as the daughter is in the house and the you know, waiting for the funeral home to the mortician to come get mom and all that kind of stuff, she's looking around, and there's like stacks of mail piled up, because mom was so overwhelmed with taking care of dad, she's exhausted. There's only so much energy that we have, it's a finite amount when you're, especially when you're at ease. And so then the daughter's like, Oh, my God, we had no idea that she wasn't taking care of the bills and wasn't taking care of any of this type of stuff. So so that's a long story of what a typical crisis can be. But now the family's got our crisis rates that they're paying to put to fix this problem. And now they've got the teen $18,000 Emergency guardianship paperwork to get done and the fee that they're like, how are we supposed to pay for that? They've got the cost of the funeral, because parents didn't plan ahead with a funeral either. So that, you know, they're they're looking at 3540 grand, just like within within a few days, right. And so that's why it's so important.

Kosta Yepifantsev: 26:11

But to solve the problems of having so many different siblings, and kids living in so many different states, and being confronted with this with with the, with aging, essentially, of your parents. The best solution is to create that aging plan. And but more importantly, like, when should they start creating when their parents are 5060? When is it when is it too early? When is it too late? You know, when should they? Okay?

Annalee Kruger: 26:45

It's never too early, in my opinion. And this is why because every single family needs an aging plan. I'm 50 years old, but when I was 40 I had because I'm also an international speaker on all of these types of topics. Right? So I just made it through Shenzhen and Beijing, China. God, I don't know how I made it through but I've managed Thank god. Yeah, I'm I that that is on Anneliese list of accomplishments and, and but then I come back to Sheboygan, Wisconsin because I had built care right in in Milwaukee. And I had a cluster of clients in Sheboygan. So I was just going to have a Sheboygan week. Long story short, I'm walking, I'm walking up the street on the main street in Sheboygan, I encounter this little cute little older guy, he's in his 80s. I can't help myself, I just I love elderly people. They're my people. So I'm like, Hi, how are you? And I know when you ask an elderly person that you're gonna get a whole laundry list of their diagnoses and how constipated they are. And I'm cool with that, because I know my people. So he's telling me all about his health issues, and we get to the intersection and we get the little green light that says we can go so we walk across, he's still telling me about his heart stents that he had put in six months prior. All of a sudden he yells watch out the next thing I know I'm getting up off the street. I at the time had a yellow leather backpack as a person, I carry way too much crap with me. But it saved my life because the school bus driver was distracted by the kids on the bus. And instead of looking through the windshield at the four corners stop, she was looking up in that mirror because there were kids fighting and so she blew through the four corners stop. She did not apply the brakes until she saw my face break the headlight of the school bus. I have this team feet and got up. I'm a farm kid. I'm 510 Thank God that you know, I'm not a frail little lily flower

Kosta Yepifantsev: 28:42

by a school bus.

Annalee Kruger: 28:43

Yeah, the the bus, the headlight. That's what all these scars are right here. So anyway, this she was distracted. And so my point in saying, how, when is the time the time is now because I certainly did not wake up three days after my 40th birthday on May 3 of 2012. thinking, Hmm, I think I'm gonna get hit by a school bus and have my whole business derailed. My health derailed, and honestly, my finances derailed because not working for a year kind of sucked. Yeah. And so So my point is life, I've said this twice now on this podcast, life has its own agenda. We have to be prepared, we have to get through that layer of denial of nothing's going to happen to me. Nothing's going to happen to my parents or our age. Our elderly parents have to get through that denial and say and stop saying, Well, of course I'm going to die at home. And we don't need to talk about any of this kind of stuff, because none of that's going to happen to me. But yet 1000s of people had major strokes last Thursday, and they didn't wake up thinking, Oh, I'm going to have a devastating stroke that's going to land me in a nursing home at 16 grand a month. Now do that,

Kosta Yepifantsev: 29:50

you know, so as I'm doing this presentation, and I do it often, and I do it to a wide array of audiences and it's primarily around have long term care strategies and estate planning to try and avoid having to essentially divest all your generational wealth to qualify for Medicaid. And I don't ever paint a rosy picture, I explain the increase in demand as people start to age, I try to lay out as many statistics about people who are retiring, you know, only 60 to 70% of them are going to retire on Social Security income alone. And, you know, I try to make it as bleak as possible to try to get people into action. So I have a friend of mine, this was in the same meeting where the financial planner was talking friend of mine, good friend. He, you know, is very fiscally responsible works for a bank. He's in his late 30s, early 40s. His dad's in his 60s. And, and he's and I could tell like, the blood is leaving his face as he's taught as we're talking. And he says, I'm going to go and call my dad right now and tell him that we need to start working on these things. And then within two hours, he texts me and he says, Hey, I talked to my dad. And they said, they're going to self fund. That's all he said. So after this, after this episode is out, I'm gonna send it to him so that he so that he understands that it's a lot more than just yeah, sorry, son. I'm gonna sell fund Have a nice day. Yeah. And yeah, people don't understand until it's too

Annalee Kruger: 31:32

late. They don't understand until it's too late. And I just want to say to the state attorney thing is like, really kind of,

Kosta Yepifantsev: 31:40

that's okay, I know I hit a hot button. I'm good with it.

Annalee Kruger: 31:43

thorn in my side. Right, because, because I have spent, I've been in the long term care space working with families and seniors and very sick, frail people for 30, over 30 years, because I was a candy striper in nursing homes. I mean, I literally lived in nursing homes for the bulk of my life working, working in them and volunteering in them. So I have spent plenty of time in nursing homes and ICU units to know what quality of life means to me. Now, that is such a personal, like, when you think about quality of life, what does that really mean. And I had to rethink it when COVID hit two because I have like two pages of an addendum in my health care power of attorney documents because in case I can't ever communicate because I I've worked with I work with dementia patients, traumatic brain injury, people, they can't communicate, they went from day one day being able to communicate to you know, a motorcycle accident with a traumatic brain injury to and not being able to communicate at all. So like I have two pages of an addendum of instructions for my healthcare power of attorney that I didn't have walked through with my brother and my sister because I don't have kids, they're, they're my my siblings or my decision makers. But I don't want feedings, I don't want a feeding tube, I don't want to be poked and prodded at all. And so when I had my bus accident I carry because I do crisis, I have like my own trauma from my families who choose not to plan ahead. So I carry my Living Will my power of attorney and my HIPAA document because I travel a lot. And God forbid something happened to me, like I did not wake up that morning thinking I'm gonna get hit by a school bus. But thank God, I carry those documents with me, in my bag, in my purse and in my car, because I don't want to be one of those people that ends up with a feeding tube and a trach and then relying on an $11 an hour employee to suction me because I can't suction myself and then drown in my own saliva. Yep. You talk about painting an ugly picture? Oh, yeah, that's real. That's,

Kosta Yepifantsev: 33:47

and it's an every single state all 50 and the territories.

Annalee Kruger: 33:52

And so for oh my gosh, this attorney is like, because here's the thing, if you don't have these documents in order, and God forbid, you know, your dad has a stroke. And now it's like, okay, who's going to make sure the bills who's going to take care of the financial stuff, right, like, who's going to make sure that the bills still get paid, because that generation doesn't do a lot of auto pay, they still cut checks. And so it's not like you can be in Ohio and dad and mom in California and like manage their unless you happen to have their checkbook, you know, you got to like shift everything online and stuff, you know, so. So my point is that too many times because I work with families in crisis, and they most of them don't have any of this stuff in place. And so they're like, Well, how am I supposed to do the financial, the financial power of attorney, when I don't have any idea who the financial planner is, I don't know who the attorney is, I don't know where their accounts I don't have any of their passwords. I don't know what they have for long term care insurance, if they have insurance and all if they have multiple properties, because a lot of my clients have multiple properties across the country. They're like I have no idea where these properties are. If they're for landlords, they have no idea who to contact for property management. You know, so if you if you want your kids, I don't know, the audience here. But if if you want your kids to be successful as a power of attorney, you have to give them the information they need to be successful. Same thing from a healthcare perspective, if you've named a health care power of attorney, you have to sit them down and say, these are what my wishes are, this is what I feel strongly about. Like, that's why I have a two page addendum of instructions, specifically for my power of attorney. And we go over this twice a year, because I travel a lot. And that way, and I'm doing them a favor. And they know that because the worst thing families do, like families make tons of mistakes, because they don't know what they don't know. And so the worst thing to do is not have documented at all in place number to have them in place, but then never tell your family that you have them and what your wishes are and not giving them a copy of the power of attorney because otherwise they're they have to have it in their fingertips because they're going to have to produce it.

Kosta Yepifantsev: 36:04

Let's say that a family did all the right things. They got all the they have the aging plan in place. They have a they have they've saved for retirement, they have you know, the income to be able to support themselves and long term care. Let's say they even got long term care insurance. Okay, which is only 7% of the of the US population,

Annalee Kruger: 36:27

that would be a unicorn.

Kosta Yepifantsev: 36:28

Yeah, exactly. Right. Let's say they got it all. At the end of the day, though, and I'd love to hear your thoughts on this. I mean, obviously, there is a there is a level of morality attached to this question. But I'm just curious, how do you set the correct boundaries. So caregiving is a full time job, whether you have a plan or not, you're still going to be engaged, let's just say it's a part time job, it's 20 hours a week, that's still 20 hours a week, most people in America have to work 40, even 60 hours a week, you also have a family that you have to attend to? How do you set those boundaries in caregiving without feeling guilty?

Annalee Kruger: 37:10

That's a loaded question. So when we work with our clients, you know, because we were facilitating the family meeting and say, what's working? Well, what's not working well, in our clients, the whole family, right? So everybody gets a everybody gets a say, because it's affecting everybody in one way or another. Even the brother who's not involved, it's still affecting him in a one in one way or another, because it's going to affect the whole family. So so when we look at when we work with our clients, we're like, Well, what do you want to take off your caregiver plate? Because I find out from each person who's doing what, like, what is your role? who's doing what, how much time are you spending, because families aren't talking about this. And so then the siblings are like, Oh, daughter, Sally, you're always over exaggerating how much time mom takes well, so you know what, Fine, keep a time tracker, keep a log. And that way, you can say, Well, I had to take four days off work this month, because mom had four doctor's appointments and that. And so so we need to look at, okay, if there's funds there, if there's resources there to pay for outside help, we need to take off the most pressing difficult, frustrating resentment causing tasks. So care coordination is an example because you have to make all these calls to doctor's appointments and the VA during normal business hours. Well, if you work a nine to five job, which there really isn't anything like that anymore, it's like a 12 hour job. No, can't just step away for two hours because you're on hold with the VA for an hour and a half trying to get a hold of somebody. Or if you have to, you know, the doctor change mom's prescription and you have to be on the hold was CVS for an hour, you just can't do that. So and keep your job and keep your sanity and keep your relationships. And so that's why we're like what do you want to take off your caregiver plate because then we can do your care coordination, because we're virtual. So we do virtual care coordination for families all across the country. Because that way, you need to think about how do you want to spend your energy because that is a finite asset that we have. How do you want to spend your time and how you want that relationship to be these last years with your elderly parents? Would you rather be resentful and angry because you have to take another day off work or miss another vacation? Or have your husband on your budget because he's like, Oh, we can't travel to Rome because your dad is having surgery you know? So so we outsource that we're like okay, you've got money to pay for this is this is how much is going to be a homecare companion in your area is going to cost this much a Geriatric Care Manager, you know, our advocacy services to be the project manager basically so that you can just be the son and the daughter but yeah, it's gonna cost money. So

Kosta Yepifantsev: 39:57

when it comes to self care, though, you know at As we're as we're pivoting through this conversation, I want to hear more about kind of what you think self care means to a caregiver. And more importantly, maybe some actionable tips that caregivers can incorporate into their routine to ensure that they're taking care of their own needs.

Annalee Kruger: 40:17

I actually asked because we can't be so audacious to assume that we think that we all know what self care is for someone else. That's That's an assumption. I know what self care is for me. And so self care for me is I want time alone. I need to recharge, it's reading. It's listening to music. It's listening to podcasts. So I asked each person, what does self care mean to you? Because I do a caregiver burnout assessment with my clients, and they are all in the severe burden range. So I'm like, because they're coming to me and Christ, how

Kosta Yepifantsev: 40:58

many clients? How many clients do you see annually? Oh,

Annalee Kruger: 41:03

so we usually have about 125 clients per month on different services that we offer amazing across the country, and then a whole bunch in the UK, because they can't just, you know, hop on a plane every time dad falls?

Kosta Yepifantsev: 41:20

Is it fair to assess that you have a fraction of the need, in terms of I mean, you're seeing without looking roughly about 1500 people a year, 1500 families a year. And think of how many people are out there that don't even access your services? And they don't know about it? They don't know about it? Are there other? Are there other companies like yourself with across the country,

Annalee Kruger: 41:47

companies that do bits and pieces that we do have what we do because there's companies that do Geriatric Care Management, you know, but they're not. They're not doing aging planning. They're still it's still crisis mode. So when we'll talk about and then there's the, then there's these companies that do placement, you know, so they just work off of commission, you know, they only refer people to where they get the kickback. And I that's a whole nother thing. I'm not gonna go into that. But there's no planning, there's no Grab and Go binder. There's no patient advocacy is just a transaction. It's a one and done. And if your parent runs out of money, and they're in that facility that they got placed at by the placement company, you're on your own. And or if that, are you, you chose one of the companies that the placement company referred to you. And then you find out oh, my gosh, mom's been abused or neglected. They've, they're not doing anything for her. There's no, there's no support there. It's a transaction, it's a one and done. Or they'll move you or parent into a different facility so they can get yet another kickback. Because that's how that all works. It's not client focused. It's kickback focused. So anyway, I got off on a little tight.

Kosta Yepifantsev: 42:55

I think I took you down a rabbit hole. Buttons for me.

Annalee Kruger: 43:01

Okay, so asked me that question again.

Kosta Yepifantsev: 43:04

Well, I just I just love to hear your perspective on self care. I know that you said it's different for everybody else. But I mean, just I guess some some simple things that that caregivers can strive for, to say, Okay, I'm at least some caring for myself and a general standpoint.

Annalee Kruger: 43:21

So in general, what seems to be across the board. What people are looking for, and what they're craving is stuff that they haven't had for weeks or months. They want time alone, they want, they want their care recipient to say thank you. They want to be able to read a book without being called Honey, I needed to go the bathroom, they just want to be able to read a chapter or read a book, they want to be able to unplug from their phone from dad calling at two in the morning, because he's added toilet paper they want they want that boundary and they want to be able to schedule a vacation and actually have confidence that they're going to be able to go on that vacation. They want to go get their hair done because they haven't been able to get their hair colored for weeks or months. They want to go to the salon to get their nails done. They, they they want their spouse to say Hey, honey, I've got you, I've got you. I've got instead of you're not performing your spousal obligations because you don't have energy or you're not present or you're always looking at the camera to make sure your dad didn't fall when you should be spending time with us. I mean, those are the common themes of families that say I just I just want some time alone or I want somewhere that they think you or say you know this is noble that you're doing this but but there's a fine line between being a caregiver and getting burned out to when you're when you can tell that you're emotionally stressed out or when your head hits the pillow and you should be sleeping, and you're like, oh my gosh, did I did dad take his meds tonight, you know, when you have that kind of angst and anxiousness about you, that's you're heading in the wrong direction of being a healthy caregiver. When when caregiving has derailed your physical health, and you're gaining weight, you're not sleeping, or you want to sleep all the time, or you've got blood pressure issues, or your diabetes is out of control. So when it's derailing your emotional health, your physical health, your finances, because a lot of us caregivers are shelling out a lot of money in airfare or gas checking in on parents or Yeah,

Kosta Yepifantsev: 45:42

coming not to, not to mention the unpaid caregiving thing that's been a

Annalee Kruger: 45:48

gap of that, you know, and families will say, you know, I took early retirement, not thinking that how how much of this care is going to cost because again, families are coming to us that care, right? thinking, Oh, Medicare is gonna pay for everything. Or they think that their parent can stay home 24/7 until they die on Medicaid, and I'm like, Medicaid doesn't cover that, you know,

Kosta Yepifantsev: 46:11

you know, so there's so much education that needs to be making

Annalee Kruger: 46:14

bad decisions off of wrong information. And that's why when we do aging planning, it's a process because we have to educate them so they can make smart decisions. And that plan is that's great. If mom and dad want to age in place at home, here's what that's going to look like. And here's how much that's going to potentially cost. But what's the plan if aging at home doesn't work out? Or it's not feasible or safe? We have to do that care matrix to so that you understand what care options are available to you based on what you can afford? How long are there waiting lists? What are their State Surveys, like? We teach our clients how to tour these different care communities we teach our clients, what are the differences in levels of care, independent living, assisted living memory care, secured memory care versus alarmed memory care, families don't know that there's two different kinds they don't under they don't know what home health is compared to companion care. So it's really you know, we have to educate them and teach them how to do those tours of those different care communities proactively to get yourself on the waiting list so that if or when things change at home, you're not now at the 11th hour trying to find communities that you can move into. That's why I started care right in the first place is because families weren't planning ahead at all. So we gotta get everything buttoned up if you want to have the best aging and caregiving journey possible.

Kosta Yepifantsev: 47:35

Emily, I want to talk about your book, The Invisible patient, where you talk about the emotional, physical and financial toll experienced by family caregivers. How does this book help empower both caregivers and their loved ones?

Annalee Kruger: 47:51

Yeah, so it's actually so when you asked about demand, because there aren't other companies doing what I'm doing. Like I said, there's companies doing bits and pieces. So my, before my dying day, I want to be able to reach these millions of families all across the world, because it's not just the United States based issue. It's people all across the country are caring for elderly parents, and they're getting burned out because they don't know what they're getting themselves into. So I've literally had 1000s of families through the last many years say, I just wished that there was like a what to do with mom and dad as they age kind of guide book. So So I wrote one. And so it's thicker than what I expected or what I it's longer than what I always is. And my editor was like, we want it to be 99 pages or less. I'm like Fat chance of that. People need to know, but I also wrote it in like 40 Well, they edit it and put it in like 14 point font because I know my population, you know, they're they're older. So anyway, the it's called the invisible patient because usually when I'm working with clients, I'm the first person that they've dealt with it as has actually asked, How are you holding up because everyone's always like, Oh, how's your dad? Well, Dad's fine, but it's killing me. Right? Yeah, like caregiving is killing me. So the invisible patient is jam packed with scripts on how to facilitate your own family meeting, how to broach these topics with your family, a checklist on the your Grab and Go binder. You know what we have? It's a plug and play solution. It's a grab and go binder that has all the whole checklist of what you should have in place accounts, passwords, state documents, absolutely surance, all that kind of stuff. But it's also like how to tour care facilities and like pages and checklists of considerations. What if mom needs one level of care and dad needs another? What if mom's a primary caregiver to dad and he's got dementia and mom dies. So it's a whole resource guide. And it's meant to be read in one of two ways, because it's all by chapter. So for families that are in crisis, they tend to flip to the chapter that they need to learn about Most, but other people read it cover to cover. So just so you know, there is some redundancy in it because I don't know the audience if they're going to read cover to cover or use it as a training manual and just read chapter, the chapters that they need to know. Plus, I honestly wrote the book literally from like midnight till four o'clock in the morning for weeks on end. So I'm sure there's a lot of redundancy in there.

Kosta Yepifantsev: 50:23

So it's sometimes it's important to drive the point home, you know, it

Annalee Kruger: 50:27

really is. And so my point in writing the book was that way there are I can offer solutions to families with literally any budget and the book is 20 bucks, if you don't have $20, I can't help you, you have to be able to invest in your own outcomes. And the thing is, the other thing is that, like, there's agencies out there that you can go to for resources, but the reality is that it just causes more confusion, because you can go and pick up brochures and flyers, but then what are you gonna do with it? And that's the problem is there's, there's information you can Google but it's not going to be your specific need.

Kosta Yepifantsev: 51:03

And also, you know, when you start talking to an agency, you're automatically going to be spending a lot of money without even a plan or a general understanding of what to expect. I mean, there's no, there's really no end in sight. And obviously, money is not an infinite property, right? Eventually, it goes away. And, you know, I'll be honest, most of the private the private pay clients, even in a community, such as Cookeville, which is a very small town in Tennessee, with a population of about the county, the entire county has only 80,000 people, and it's between Nashville and Knoxville, most private pay rates are in the $30 range now. And it's even higher in Metro markets. Because if you want a qualified staff member that you can rely on, you're gonna have to pay them pretty well, you know, and, and it's, it's fascinating to me. How many people just don't know what they don't know, don't know what they don't know. It is fascinating. I have I do have three questions. And just real quick questions. With with relatively short answers you cover or you can you can operate within all 50 states, and you can even operate internationally. Right? And your opinion, are there any states that are actually doing a good job? I'm just curious, because I mean, you've been you have more experience in this and in a much more macro standpoint,

Annalee Kruger: 52:39

I will say that I was more proud of health care and long term care before the pandemic, pandemic shed the light and that it when I got my when I got my master's degree in 2008. My thesis was the changing landscape of health care and long term care about we have a shortage coming of family caregivers, because families are smaller than they've ever been. So less pool for family caregiving and less pool for professional caregivers, when I and I don't want to totally bash Florida but when I came from Milwaukee, we have some pretty decent care options in Milwaukee for care facilities. But, but we also have some bad ones there too. But when I came to Florida, I will admit that I feel like I came to the Twilight Zone of health care because I am. I've never been so angry and frustrated at care facilities and health care agencies that should care about their patients and making sure that they are providing quality, properly trained staff,

Kosta Yepifantsev: 53:54

we always like to end the show with a call to action. After 30 years in the industry, what's your best advice for listeners on how to have a fulfilling and happy life as a caregiver?

Annalee Kruger: 54:07

Oh, communication. I would say communicate and I would say communicate with your family and say hey, we're having struggles here we need we need to work as a team. So I would because if you communicate properly and effectively then you can work as a team as a family. But you have to do it ahead of time you have to do it before family resentment happens and crisis happens with families you have to you have to start communicating earlier so sooner rather than later. And not shy away from difficult conversations about dementia or being you know, admitting that you're getting burned out as a caregiver so that i That's why I chose communication because it's broad enough that it's going to add value in every single area of your life.

Caroline Moore: 55:02

Thank you for joining us on this episode of Now or Never Long-Term Care Strategy with Kosta Yepifantsev.If you enjoyed listening and you wanna hear more make sure you subscribe on Apple podcast Spotify or wherever you find your Podcasts,leave us a review or better yet share this episode with a friend. Now or Never Long-Term Care Strategy is a Kosta Yepifantsev production.Today’s episode was written and produced by Morgan Franklin. Want to find out more about Kosta? Visit us at kostayepifantsev.com