Welcome everybody to our next edition of our speaker series with the Petika Wealth Management Group over here at UBS Financial. This is John Petika Jr. based in sunny Clearwater, Florida, and the topic today is a challenge that most families are going to face, whether we like it or not, it's about aging and the decisions that we or our families have about aging, and we're going to talk about how to get more prepared for it.
We have a special guest today, Annalee Kruger, who started Care Right, it's a virtual consultancy business, in 2011. After working in continuing care retirement communities for 22 years, she observed a lot of families that were constantly blindsided and ill-prepared for medical crises like strokes and dementia, and were just thrust into making major care decisions on behalf of aging parents. She saw a lot of families had no idea how to navigate senior care, dementia, changing roles within the family and how to manage their own lives, plus the needs of their aging parents. They also had no idea what their aging parents even had in order.
So Annalee has devoted her career to guiding family caregivers and their aging loved ones with the decisions about aging. She also has authored a book, "The Invisible Patient: The Emotional, Financial and Physical Toll on Family Caregivers." So Annalee, welcome to our call today. Annalee Kruger:
Good morning everyone, and thank you, John for having me on your podcast today. I'm really excited to be here and just talk about real life stuff that I see literally every day of my career. And my goal for today is really to bring awareness, support, education, and empowering you, whoever's listening to this, whether you're the adult child or the aging parent, you're the Ethel and the Marvin. I really want to empower you to have some really key takeaways about what does this aging and caregiving and dementia and senior care journey look like. So here we go. John Petika Jr.:
Yeah, let's just start right there. Can we talk about what is a family caregiver and how do their roles differ between having a local caregiver? And then we also see there's long distance caregiving going on. Can you talk about that? Annalee Kruger:
For sure. So that's actually why I started Care Right in 2011 as a virtual family caregiver consultancy. Just to give you a little lay of the land, there's different statistics out there, but most statistics are that there's 65 million family caregivers across the United States, and that's just how many people actually identify as a family caregiver. So when we talk about a family caregiver, it's things that you're doing to help your loved one, whether it's your parent or your spouse, and you're not getting paid for it. So it can be little things like going to the mailbox, picking up the mail so that your mom or dad doesn't fall in the winter time or fall down the driveway. It could be things like setting up their medications, going to the pharmacy to get the medication changes, doing grocery shopping, calling the financial advisor to talk about moving money around for care, contacting the long-term care insurance company, health insurance company. It's managing their finances.
It starts out manageable and doable, and you're like, yeah, I think I got this, but then we call it the caregiver snowball, where now you're taking time off work. Your spouse is like, look, I love your parents, but this is getting out of hand all these rescue missions and missing our own vacations or our own family time. So when we talk about local caregiving, because sometimes people are like, well, lets at least just move mom and dad in with us or closer to us so we don't have to keep flying back and forth because their family just don't live near each other. But there's no easy solution other than let's put a plan in place. So when we talk about local caregiving, kids end up taking... Our typical client is spending 20 to 30 hours a week managing their loved one's care, being the care patrol, having to check in on them or ordering groceries for them or taking them to doctor's appointments and coordinating care.
Those are typical scenarios of most family caregivers. You get thrust into this and you're not prepared for it. If you're looking at being a long distance caregiver, you might be thinking, how am I going to do this? I know you probably live mostly here in Florida, but for the people that are listening to this worldwide, if you live in hypothetically New York, but you have to keep flying to Tucson, Arizona every two weeks because you're so concerned about your parents' safety, or your mom is the caregiver to your dad who has dementia and mom has a stroke and you guys have no aging plan in place and you don't know what care options are available, who's going to pay for care? Where are they going to receive the care? What are the things that we need to know about? It gets really, really stressful very quickly. And then to realize that you don't know what your parents have in order.
Do they have a living will, power of attorney, long-term care insurance? Who are their specialists? What do we need to know so that they can get the best quality of care? So whether your long distance or short distance, across the street from your parents, there's going to be challenges that hopefully through the course of this podcast, you'll be able to put some specific systems and plans in place. John Petika Jr.:
One of the things that we find talking to our clients is that caregivers, they want to care for their loved ones so much and they just get burnt out at some point and it's sad to see, and you hear it in their voice when you're talking to them on the phone. How can caregivers manage or prevent getting burnt out? Annalee Kruger:
By putting a plan in place. One of the things I see literally with most families is one, if they've tried to have their own family meeting, it didn't go well because the family relationships, family dynamics, everyone has a different idea of how well mom and dad are functioning at home. I'm going to say this and it's going to sound icky, but everyone has an idea of how their inheritance should be spent. I'm not going to beat around the bush on that because that comes up frequently. And everyone has a different idea of how safe are they or how demented is dad. So there's usually one primary family member who's seeing the writing on the wall and they're like, hey, you guys, we need to get ahead of this because wandering out of the house or she's not taking her medications. All of these red flags are always there, but you need to be able to see them.
So to avoid caregiver burnout, number one; if you do try to have your own family meeting, just know that it probably not going to go as well as you would like because everyone has their own different ideas. So that's why we use a neutral third party family meeting facilitator. And 85% of my week is spent doing family mediation with families literally all across the country. So avoid caregiver burnout. Number one; take care of yourself. I'm telling you, when you get thrust into caregiving, your whole life will go upside down pretty quickly, and pretty soon you'll be very anxious, depressed, short-tempered, just not yourself.
So you'll notice some emotional changes with you. You might notice some anxiety like, oh my gosh, when that phone rings, does that mean dad fell again? So self-care, whatever that means to you, setting some boundaries and also not ignoring the red flags that your parents are not doing well at home. If they've had falls, if they've had weight loss, if they're not taking their medications, if they're not paying their bills, and when you go visit, they have four months of stacked up mail, so don't ignore those signs. Or if they got scammed, or when their dementia progresses to the point that they just can't manage at home safely, and there's so many safety concerns, that's how you can avoid getting burned out. Staying ahead of what's coming down the pike and being realistic. None of us are going to get stronger, more able-bodied, more mobile and more independent as we age.
So we just need to face this aging thing head on and not be so afraid of it. And also listen to your body. And I say that because your body will tell you in multiple ways, and if you ignore your body's indicators that you're stressed out, you will end up with your own medical issues. My clients come to me that the kids are actually in worse shape sometimes than the parents because we've bent over backwards trying to make sure our parents are safe and have the care they need, but blood pressure issues, if you already have a chronic disease, it can make that worse. If your family and friends are saying, "Gosh, Annalee, you used to be joyful and bubbly and now you're just so tense and stressed out all the time," listen to your body and listen to those around you. Those are all indicators of caregiver burnout. John Petika Jr.:
So let's talk about the adult children caring for their parents. How can they prepare for caregiving? It seems like a lot of people are unprepared when they get thrust in this situation. How could they better equip themselves? Annalee Kruger:
Yes. Educating yourself. So one thing, almost all of my clients have dementia and I've yet to work with a family, and I've worked with over 20,000 families in my career, and so I have yet to work with a family who understands dementia. They'll say things like, well, if dad's dementia gets worse, or today he was okay when I went over to talk to him or he sounded okay on the phone. So not being in denial, understanding the disease that your loved one has. I work with special needs families as well too, and it seems like our special needs parents understand, they've researched that disease that their child has forwards and backwards, inside out. But when we have aging parents that have dementia, Parkinson's, all of those. Lewy body disease. Families, they don't do the research and the due diligence. And part of our issue is our healthcare model is broken. And so your loved one will get these big diagnoses like that and then it's like, okay, well good luck to you. Figure it out on your own.
And so how to be more prepared, understand the disease that your loved one has. What do they have in order? Have some conversations. Leverage this podcast and say, "You know mom and dad, I was listening to this podcast and we don't really have anything in order. We haven't really talked about things." What do you have in order? Do you have your advanced directives in order? Where do you want to live as you age? They'll tell you they want to age in place at home and that they don't want to be a burden to you. But guess who is always the one calling Care Right? It's the adult kids.
So if you're the parent listening to this podcast, if your kids come to you and approach you and say, "Hey, we're really worried you just had another fall or another urinary tract infection and one of these times something disastrous is going to happen, let's get ahead of this a little bit." Be open to when your kids are trying to have these conversations with you. And even better yet, take more of an initial stance and take initiative and say, "You know kids, I don't want to be a burden to you and I'm getting older. Let's talk about what lens of aging and here's what I have in order.' So let's start the conversations and not be so intimidated by them. John Petika Jr.:
Let's talk a little bit about the different types of care. There's challenges of caring for someone with a broken hip and then there's challenges with someone who's caring with someone with dementia. Could you talk a little bit about that? Annalee Kruger:
So just think about, seriously, just take one breath and take one second and say, okay, if you got that phone call today that your dad had a stroke and your mom is his caregiver, I mean, think about that for just a minute. What are you going to do? What conversations have you had as a family? And because your life is going to turn upside down quickly. If your parent has a broken hip, some families are like, yeah, I think we can adjust our schedules. We'll take our vacation days. We'll take all of our vacation days. We'll talk to our HR department about using SMLA, the Family Medical Leave Act. And so that way your job is hopefully going to be preserved for you so that if you do take time off. But most families are like, yeah, I think within the family we can make this work and take care of mom because it's temporary for a broken hip.
But that's a totally different ballgame then if you've got a loved one who has dementia where that person is going to need 24/7 care, as that dementia progresses and their brain continually shrinks and they don't have safety awareness and they're wandering out of the house or they're not taking their medications or they're still driving and getting lost. That 24/7 care that's coming down the pike, when you have a chronic disease like that, that's again where families get really overwhelmed with that caregiver snowball. And part of it is because they don't understand really what they're dealing with with dementia.
And I do want to say that not everybody is wired personality wise to be a caregiver, and not everybody wants to be a caregiver, and not everybody likes their parent. Maybe they were a bad parent and now you're like, I have to take care of someone who treated me poorly? Are you kidding me? So these are the things to think about. Or what if you are taking care of your own sick child or own sick spouse and now you get that call that mom had a stroke or she's got a broken hip, you're already maxed out with your bandwidth because you've got a job, you've got family. So you can see how quickly everything unravels and your life gets derailed if you don't have an aging plan. John Petika Jr.:
You mentioned it before about red flags. Can we talk about how families can recognize when their loved one is just failing at home? I know over here when we're talking to clients, we've had some of these clients for generations, and they might say something and we might hear something that's out of the ordinary. We're like, oh, and our antennas kind of go up. That's something odd, that's not normal. Can you talk a little bit about that as far as red flags that they might miss? Annalee Kruger:
Yeah, common like dementia or memory impairment... That's the other thing. Some people are like, oh, don't say that word dementia. We don't like that. I'm like, okay, let's still get out of denial here. So dementia, red flags specifically because so many families are dealing with a loved one with dementia, memory impairment, whatever is comfortable for you to say it, the signs are there if you pay attention. So just know that again, it boils back down to understanding the disease. They can cover really well in the early stages, so you wouldn't really know that there's anything going amiss with their memory because they can cover pretty well. But as that disease progresses and they continually into that next stage of it, they can't cover anymore. And so understanding that if there's forgetfulness, consistent forgetfulness, if they're falling, if they've been in the ER, if they're losing weight, if you go to visit and they have bruises on their arms or their legs, they're likely falling or just as bad, they've got someone there that's abusing them.
Be aware of who they have that comes to check in on them, if anyone. I would encourage that you also get to know the neighbors if you don't already know the neighbors, so that you can kind of be aware of, okay, what is dad doing? And they have your number and you have their number. Some of the other indicators that they're failing at home is what families don't always think about looking is oversee the medications. What system do they have in place? Do they have all their pill bottles in a shoebox and they're trying to figure out their pills that way? Or what system do they have? Do they have them in the cartridges? Who is managing their prescriptions? What I see often because families don't realize this, they just think that, well, dad was a president of a big bank, so he can certainly manage his own affairs and his own medications.
Well, they can't until they can't. And so the mistake families make is assuming that their parents are doing okay on their own. I do want to share a statistic. So for those of you that have a parent who just maybe discharged from a hospital, 48% of people discharged from hospitals do not follow through with the discharge instructions. So they're not following through with the followup doctor's appointments, they're not getting their pills changed out, if there's been medication changes. Because they're still weak, they're still tired, they might be disoriented, and so they're not following through. That's why we use care coordinators. If the family's not going to be able to do those roles to make sure that their loved one is safe at home, we have to then hire people to make sure that those things happen. John Petika Jr.:
Annalee, lets talk about the pros and cons of aging at home versus other care options. I mean, when we have conversations with our clients, the majority of them early on when they're a little bit younger, it's always at home. They never want to leave their home, but at some point it's almost like a progression and then they end up having to leave their home because it's too much stress for everybody. But can you talk a little bit about the pros and cons of at home versus the other options they have available? Annalee Kruger:
For sure. Considerations about aging in place at home, because like I said, our client's the whole family. So when I ask mom and dad, what are your goals as you age, it's always the same thing, I want to age in place at home and I don't want to be a burden on my kids. But here's the reality of what aging in place at home looks like, and I don't want to scare you. My point in this is to educate you. People can stay at home as long as they can and while it's safe, but here's the things to think about is, we have a national massive shortage of healthcare workers. 30% of my clients who are trying to age in place at home are on a waiting list of at least three home care companies because they don't have enough staff to staff those shifts.
And so we have a massive shortage of healthcare workers, number one, and of the healthcare workers that we have, not everybody should be in healthcare working with seniors and vulnerable adults. So that narrows down whose good and who's qualified and who shows up for their shift. So what people don't realize is all of these home care companies have shift minimums. It might be four-hour shifts or eight or 10 or 12 hour shifts depending on where you live and what they have for staffing. And so sometimes people are like, well, we don't need a 12-hour shift. Well, that's what you have to pay for if you want home care, because that's the only way they can make that work. The cost of staying at home, home care across the country, it varies, but roughly since the pandemic, I've got clients paying anywhere from in rural areas, it's $25 an hour, but I have clients in larger areas that are paying 60 and $65 an hour. And so you can do the math. If they require four, six, eight, 10 hour shift minimums, you can do the math.
And when people want to age in place at home, what that means is that means you're going to need 24/7 care or very likely going to need 24/7 care. And my clients that are aging in place at home, they're spending anywhere from $30,000 a month to $80,000 a month depending on how many companions they need. It's worth sharing how it can possibly be that expensive. We'll use my dad. He's 6'4", my mom was 5'2". My mom has mild cognitive impairment. She fell that progressed her disease significantly, literally overnight to the point where she was wandering, had her days and nights mixed up, sun-downing, all of these things. Two weeks after my mom fell, my dad had a stroke and he's 6'4".
If he would not have had a full recovery, he would've needed two companions to get them from point A to B, wheelchair to the toilet. And my mom needed her own caregiver because of her dementia progression that happened so quickly. So that would've been about $80,000 per month. And that's just companion care, where they're just coming to make sure they're bathed, dressed, groomed, they're eating, they're reminded to take their medications. That's not medical. So if you need a nurse, like a geriatric care manager or a care coordinator to set up your doctor's appointments and therapy appointments and medications, those are roughly another, depending where you live, 125 an hour to 300 an hour door to door. And so that's where you can then add on another sometimes three grand to five grand a month.
So that's why it's so important to know the lay of the land here because when you say you want to age in place at home, but if you only have your house and your social security check, that's not going to cut the mustard. So lay of the land of home care is we have to reverse engineer and say, okay, I know you want to age in place at home, but just in case you can't for whatever reason, because of the staffing issues or we just simply can't afford it... Because Medicaid does not pay for this and Medicare does not pay for this either. So it's out of pocket. Or you have long-term care insurance or reverse mortgage or VA benefits, anything like that to help offset the cost. But not everybody has that.
So when we look into senior care communities, what families don't realize is that there's waiting lists for the ones that provide better care than others. There's waiting lists. Some of these care communities, you had to have moved in at independent living level of care. You couldn't have waited to move in at assisted living or memory care. They want you to move in while you're still healthy. So families don't think about that or they don't look at the state surveys.
For us to even help families with this care matrix project that we do for them, for us to even outline five to eight viable options, we have to rule out 10 to 15 care communities because they've been cited for abuse or neglect or they don't have all of the care levels that we know that your parents are going to need or that you are going to need. And so families make these mistakes because they don't know what they don't know. They're usually working in a crisis situation. They're like, well, we have to get mom and dad out of the house. So we moved them in to this assisted living center, and now they're telling us that we need to move them out because they both need memory care and they won't help us. Where do we go for that? And how does that work? So that's why it pays to work with a professional to just let's do this right the first time. So parents aren't bounced around for no reason.
And the other thing families make, just to think about is Medicaid. If your parents don't have a lot of money, the other mistakes I see families make is they'll move their parents into a care community, not realizing that if their funds get depleted and they moved them into a facility that does not contract with Medicaid, which most assisted livings don't, and so it's only nursing homes that usually do, then your parent has to move, and how do you think you're going to find a decent care community when they're on Medicaid? You're not.
And so it's a rude awakening for families. They're blindsided. That's why we provide advocacy services or teach families how to be a bold advocate because we know through the World Health Organization study, a couple of years ago, 64% of nursing home workers admitted to abusing and neglecting the residents under their care. So I can't stress enough why we have to start thinking and talking and putting plans together now so that the goal is that our loved ones are safe and happy and have the best quality of care possible. John Petika Jr.:
All right, so let's talk about an action plan here. When is a good time to put an aging plan in place? Annalee Kruger:
Now. And I say that, I always have a sense of urgency because, well, because families get thrust into this. No one wakes up thinking, I'm going to have a major stroke today. But guess what? Thousands of people had major strokes last Thursday, and now their kids are scrambling going, what do we do now? We don't know anything about what to do. And so the time is now. I encourage people to not be living in denial. You don't have as much time to put a plan in place as you think. Things are going okay until they aren't. And then what? And so even thinking about myself, there's no age number on when to start having these conversations and getting your documents in order, your accounts, your passwords, your funeral arrangements. There's no age. Everybody needs to be an adult, and we need to do this stuff Now.
Four days after my 40th birthday, I was simply crossing the street in Sheboygan, Wisconsin, helping an 82-year-old gentleman get across the street. Long story short, I got hit-and-run over by a school bus. The driver was distracted by the kids on the bus. She didn't see me until my face broke the headlight of the school bus. So 40 years old. So there's no number on when you should have everything in order and have these conversations and get your grab-and-go binder content put together. John Petika Jr.:
I tell you that happens more times than not. We had a colleague up in New York got hit by a fire truck coming by, and he was about 40 years old too. These things happen. Annalee Kruger:
Well, and I live in Florida just like you do, and you know that we don't always have the best drivers here. Everywhere, actually. But all the people that got T-boned just trying to get home from their job and now they're in the hospital and they don't have their living will and power of attorney done, that's a problem. So there's no age number. So the time is now. John Petika Jr.:
A lot of people on cell phones driving around here. Annalee, can we talk a little bit about family meetings. I find family meetings are one of the most useful tools to get everybody on board. Could you just talk briefly about how you structure and put on these family meetings? Annalee Kruger:
Yeah. So I have a whole process that I take my families through. So we talk about what's working well, what's not working well. We also, because families are coming to us in such state of crisis, they're really not getting along very well, and it's very emotionally charged because they're scared and overwhelmed, so we also have to kind of establish some meeting rules. Like no one talks over each other. It's like kindergarten one-on-one. Don't interrupt, don't talk over each other. Let people finish their thoughts. No name-calling, no swearing. We have to set that kind of ground rule for families sometimes, and you may need to do that to your own family.
But trying to facilitate your own family meeting can be very tricky. But what is working well? What are your concerns? And if you approach it from a loving and caring perspective, approaching it from the heart, that's going to go a lot longer or a lot further than if you're really ticked off because you had to take six more days off of work and you miss really important meetings and now you're really ticked off and you're like, listen here, mom, this is not working. I've had enough. That's not going to get you very far. And unfortunately, that's what tends to happen. And so it really does make a difference when you work with someone who actually does this for a living.
The other thing to think about is its hard for you to have your own family meeting if you don't understand senior care and how care is paid and the landscape of care and how to navigate it. And if you don't understand dementia and your loved one has dementia, it's kind of hard for you to facilitate your own family meetings. I know we'll talk about my book here shortly, but in my book, "The Invisible Patient", it is jam packed with bullet points scripts, and I wrote that because I've had thousands of families, adult kids say, look, I love mom and dad, but their needs are exceeding my patience, my tolerance, my financial ability to continually help them out if I have to take off two weeks of work and airfare is 1200 bucks a pop every time I get that crisis call.
So in the book, it's more like a resource guide. It's a manual. It's not like a sit on the couch and drink coffee and think you're going to have a great old time reading it. It's about the down and dirty of what you need to know, a dementia, how to facilitate your own family meeting. There's scripts in there, there's bullet points of all of this stuff that I talked about in the book. So that could be a good starting point to leverage when you have this conversation with your own family. And again, leverage this podcast with UBS and say, you know what? This is something that we need to get on and start talking about now. If we can't do it ourselves, we have a resource here that can help. John Petika Jr.:
Well Annalee, we're getting close to the end of our time here. Do you have any final thoughts here that you think we should cover that we might not have in our conversation? Annalee Kruger:
Another takeaway that I didn't found out probably as well as I wanted to is just the real importance of having your documents in order, your grab and go stuff. Because when you get that crisis call or something happens to you and you don't have any of these documents in order or in place or at your fingertips or in your keyboard, where you can pull it up from Dropbox or whatever, having this in order, because when there's a crisis, you want to be as prepared and have everything at your fingertips because you will not have a lot of time to make big decisions. And if your loved one had a stroke and the doctor's like, we need to know what the wishes are, and you've never had a meeting about end of life and you don't know where these documents are, it gets really dicey, really expensive if you have to shell out 20 grand for emergency guardianship or conservatorship because parents didn't have their ducks in a row, or they did, but they never told you, and so you didn't know that there were documents in order.
So that's one thing is just get your grab and go, get your accounts, your passwords, and communicate what bills come out of which account, what are the passwords, because if you do have to step in, you need the tools, you need the information so you can do your job as a power of attorney. John Petika Jr.:
Well, thanks Annalee for joining us today and for those who are listening, if today's conversation brought up any questions about caring for an aging parent or just planning for your own future, we'd be happy to help you think it through. I mean, our team down here in Clearwater at the Petika Wealth Management Group, I mean, we help guide families through these transitions quite often. And we partner with Annalee on navigating care decisions and family meetings. And on our side, we make sure that the finances and legacy planning are in place.
If you have any questions, you could email us at petikawm@ubs.com, that's P-E-T-I-K-A-W-M@ubs.com. Or can call us and we could have a conversation on it. 727-507-2571. And thanks again, Annalee, for joining us today. I find this is such an important topic because it keeps coming up over and over again with our conversations with our families, so thank you for- Annalee Kruger:
Sure. John Petika Jr.:
... spending time today with us. Annalee Kruger:
You're welcome. Thank you so much. Have a wonderful day. John Petika Jr.:
All right, you too. Bye-Bye. Annalee Kruger:
Bye. Disclaimer:
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