Advice From Your Advocates
Advice From Your Advocates
Sandwich Generation Survival: The Wild West of Dementia Care
On this episode of Advice From Your Advocates, Elder Law Attorney Bob Mannor sits with author and caregiver, Nicole J. Smith.
Nicole shares her journey caring for three aging parents with dementia while raising five children, which inspired her book "Diagnosis Dementia: Your Guide for Elder Care Planning in Crisis." Her experience navigating the "Wild West of elder care" offers valuable insights for anyone facing similar challenges.
• Learning to speak four new languages simultaneously: medical, legal, financial, and elder care terminology
• Challenges convincing doctors to provide documentation for a dementia diagnosis despite clear symptoms
• Navigating resistance from a parent with dementia who fought against necessary interventions
• Managing sibling dynamics when caregiving responsibilities fall unevenly
• The importance of having legal documents in place before a crisis occurs
• Financial realities of long-term care when Medicare doesn't cover these expenses
• Self-care strategies for caregivers to avoid burnout
• Resources including Area Agencies on Aging and Aging Life Care Managers
• Finding support through organizations like daughterhood.org
Connect with Nicole on Instagram @DementiaBookReview or LinkedIn, or visit her website at NJSmithBooks.com to learn more about her book "Diagnosis Dementia: Your Guide to Elder Care Planning and Crisis Management."
Host: Attorney Bob Mannor, CELA
Guest: Nicole J. Smith
Executive Producer: Savannah Meksto
Assistant Producers: Samantha Noah + Shalene Gaul
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ABOUT US:
Mannor Law Group helps clients in all matters of estate planning and elder law including special needs planning, veterans’ benefits, Medicaid planning, estate administration, and more. We offer guidance through all stages of life.
We also help families dealing with dementia, Alzheimer’s disease, Parkinson’s disease, and other illnesses that cause memory loss. We take a comprehensive, holistic approach, called Life Care Planning. LEARN MORE...
You're listening to Advice from your Advocates, a show where we provide elder law advice to professionals who work with the elderly and their families.
Speaker 2:Welcome back to Advice from your Advocates. I'm Bob Manor. I'm a board-certified elder law attorney in Michigan. Excited about our guest today. We have Nicole Smith. She's the author of Diagnosis Dementia your Guide for Elder Care Planning in Crisis, and we all need a guide if we have a loved one with dementia. Welcome, nicole.
Speaker 1:Great to be here, thank you.
Speaker 2:Tell us a little bit about yourself and a little bit about your book.
Speaker 1:Yeah, so I am a caregiver in the sandwich generation. I'm caring for three aging parents to have dementia and I have five children, one still at home, in high school and about five years ago my world went sideways when my mother started having issues and I started flying across the country and trying to learn the languages of caregiving the financial, the legal, the medical, the emotional, the practical and I couldn't find a book that I was looking for to kind of guide me. I mean, there are definitely books out there, and so as I went through this process, I started taking notes and writing things down and evaluating things and I felt I wanted to share it with others that are in my situation.
Speaker 2:Yeah, that's great and you have a really interesting background too. Tell us a little bit about your background that helped you, and then after that, tell us a little bit about some of the challenges that you faced when you realized that your mother had dementia.
Speaker 1:Yeah. So I graduated with a business degree from the University of Texas in Austin and I worked in corporate for about 10 years. I did a little bit of sales, a little bit of training, a little bit of auditing, a little bit of everything. And then, when my husband and I got married and we started having children and moving around for his job, I was fortunate to be able to stay home with my children. And then, as they got older, I was not looking to go back to work because I still needed a flexible schedule. But I volunteered with a global nonprofit room to read, and when I was giving sharing speeches and spreading the word about that, I joined Toastmasters to become more effective at public speaking. And then I was reading and then I started writing articles and then so when all this happened with my parents, I was kind of already working on another book and then segued into this book and got it out there.
Speaker 2:You know it's really interesting when we have authors I'm always curious about. You know what you learned from the process of writing that book. So you know there's always what you learn from having to just deal with life and deal with trying to arrange. You know care for your mother and then eventually your father and stepmother. But what was that process? What did you learn from that process of also trying to then boil that down to a book? That would be interesting.
Speaker 1:Yeah, well, I call it like the Wild West of elder care right now, because there's, you know, it's a giant space and obviously people have been suffering for from dementia for decades. But with the baby boomers aging, that 73 million people, mass force, that it's becoming more and more in the forefront and prevalent. And I I just felt there was a need and a growing concern and since I was already in kind of the book world and the reading world, I knew I wanted to do it professionally. So I hired a professional editor through a connection, I hired a professional designer through a connection, and then my niece runs a boutique branding firm in the Midwest and so she designed the cover. But yes, there was a lot of frustration. I mean, anytime you're doing it because I self-published, which was my choice, and I learned a lot. And one of the things that comforts me is one of the things they say to prevent dementia is lifelong learning, and so I just keep learning all the time with everything I do.
Speaker 2:That's great. I like what you said there about the wild west of long-term care, and I think that's very true. It's amazing how much and how little information there is at the same time, and so what I mean by that is as soon as you start talking to people and telling them I need to help my mom, I need to help my dad, and you get a lot of information. Now, some of it is from people that have something to sell right.
Speaker 2:There's the marketers. All of the assisted livings and independent livings and things like that have marketers, and there's nothing wrong with that. They need to promote their residences and things like that. But it can be a bit overwhelming with the folks that are just trying to sort through all of it and figure out what is the best setting. You know what's the difference between independent living and assisted living and nursing home and adult foster care and all these different things. It's just so much information. At the same time, I think there's also little information in sort of distinguishing those. So it tends to be that we kind of group all those together and they serve different purposes. A memory care serves a different purpose than assisted living or adult foster care. They serve different purposes and work differently with government programs even, and so there's so much information kind of coming at you and it seems like everybody you talk to has different advice and yet at the same time getting clarity is hard because of sort of a lack of nuanced information.
Speaker 1:Absolutely yeah. So I'm like I'm about ready to like cry. All the emotions are coming back up because, yes I say it's like learning four new languages simultaneously, under duress. You have to learn the medical terms, the financial terms, the legal terms, the elder care terms. So I was fortunate in that a good friend of mine, my son's good friend's mother had been in the elder care industry for like 10 years. She managed, like a CCRC, a continuing care, and so I, you know, and I knew I didn't even know what she did.
Speaker 1:And then when this happened with my mom, I'm like, oh, that's what you do, like help me with my book.
Speaker 1:I was like I need to organize the overwhelm because it's hard to figure out what are the good resources.
Speaker 1:So when I was going through this and I was flying back and forth between Jersey and LA and these long flights, it was kind of a cathartic process for me to write about it. And then in certain situations, like when my mom was in the psych ward, behavioral health, and I couldn't speak to her, then I was processing and writing about that and my feelings and I started to investigate and I would find resources. I was like, well, this is a good one. I don't feel like this one's very clear, like I did training and in internal audit I did. You had to process, you know you had to interview people and understand the process of their workflow and so I felt like I can, I use my discerning repertoire, I think, for what I thought was clear and easy and concise, and someone like myself going through this massive emotional overhaul and being clueless and scared and worried. And what did I find the most straightforward and easy and reputable resources for people to use?
Speaker 1:And I used podcasts and books and movies and websites and anything that I found that was good, I put it in my little working word document and then, when I shipped that off to my editor with all of my narrative, then we honed it down to a compelling book. That's both our story and the navigating them, acronyms and the different fields. And how do you find an elder law attorney? How do you find a care manager? How do you figure all this out? Because it's hard.
Speaker 2:Yeah, that's great and it's great that you're using that hard-fought knowledge to help others get a head start on that, because it's so difficult to know where to start. I did want to clarify one point. You mentioned CCRCs. That is a term of art for our listeners that, regarding some of the government benefit programs and things like that, a CCRC is a continuing care community where you can start out even that sort of in the independence stage of things all the way up to you know, 24-hour skilled care all in one community, and it is a specific term about.
Speaker 2:There's different places that sometimes have different levels of care, but that's not necessarily a CCRC. A CCRC is a very specific thing. Now, I mentioned this and I clarify this because they are very popular in many states. In Michigan they're not particularly popular. Oddly enough, we only have a handful of them that's within our geographic scope of my primary office and they do exist, but they're not as common as they are in many other states. I've heard from other elder law attorneys that in other states that's kind of the go-to, that that's the standard level of care that a lot of communities are working with.
Speaker 1:Well, and the acronyms change. So it used to be a continuing care resource community and now it's a life plan community. But then there's also the distinction where some of them are you buy in, like a capital investment, and you, you buy, and then the other one, like where my mother's in memory care, it is a month to month and um, and I know that and a lot of these terms are used interchangeably because I asked the question. I said, well, if it's a rental, what's it called? And they didn't really have an answer for me. So I mean, and then there's different terms used in different parts of the country. So it is it confusing.
Speaker 2:Well, and I think that's one of the things that we try to get the message out there, to both our clients and Manor Law Group and from just to the general community, and particularly because we do a lot of education within the healthcare community with social workers and nursing home administrators and nurses and care planners and discharge planners all of that.
Speaker 2:We provide education, they're continuing education for them.
Speaker 2:One of the things that we're always trying to make sure people clarify is the distinctions between the different levels of care, and it's important it's probably more important to me in the analysis that we do than it is to the average person but we try to clarify because people come in and they think that they can get certain government benefits, whether it's, you know, medicaid or veterans benefits or waiver benefits or you know whatever the benefit that they're looking for and they assume that they can get those in any setting.
Speaker 2:And so one of the things we try to clarify is number one. We can probably reduce the noise a little bit by limiting it to those places that are suitable for your mom, suitable for your dad or your aunt or whoever it is that we're planning for, because if you're starting to look at independent livings and they need 24-hour care. That's possible, but it's going to be really darn expensive and it's very unlikely, so we can probably kind of limit those, and so I think it's really important to do that distinction between the different levels of care. This is the type of thing that I'm imagining that you had to figure out from yourself, having never gone through this before before you, before you started helping your mom.
Speaker 1:Yeah, and fortunately I had my, my friend, who kind of educated me, and I also just received my certified senior advisor designation because I just wanted to learn more. But yeah, no, and, and, and. Then the terminology is also scary for some people like well, no, my mom's not going to memory care.
Speaker 1:She's not going to memory care, and I mean, my mom was a flight risk and she was, and again, she fought us on everything and and as, and I didn't, you know.
Speaker 1:So I'm learning the whole language, I'm learning the process. And then the other thing is that we had to get so a lot of people's like should I get diagnosed, should I not? It's important, maybe it's not, but we had to get a diagnosis because we had to get her declared incapacitated, to invoke the terms of the trust, so that we could literally save her from herself. But, as you know, doctors and lawyers don't really mix and the doctors don't want to write these letters, but the lawyers need these letters. The only reason we were able to get the neurologist and the primary physician to sign off on these letters is that my aunt has been a nurse for 50 years. She worked in the LA market as a hospital administrator and she developed a relationship. She had the medical POA, she was in the portal, she was talking with these physicians and it took us still nine months to get those letters.
Speaker 2:That's shocking. Yeah, yes, so that's very interesting, especially for someone like you. Say that was a flight risk. That's one of those red flags where we automatically say, okay, they lack the competency to be able to manage all of their own affairs if they have a tendency to wander or get lost, you know type of a thing that seems like a bellwether that any doctor should be able to recognize. That's not been a particular big problem here in Michigan. Usually we get those doctor statements. Sometimes it takes a little bit more because if the person hadn't seen a lot of doctors and just you, typically we need two doctor statements. But that's interesting that in some areas of the country that that becomes more difficult.
Speaker 1:Yeah, I mean there's so many, and that was the other thing about with my mom like everything that we did was so incredibly difficult compared to other people we're talking to. I'm like, well, this cause, you just can't put it down. It reads like a suspense novel. I mean, she got her license taken away but she was still driving and she was obsessed with the DMV and we couldn't we couldn't take away, you know, we couldn't disable the car. But then we tried to take the car but then the police were going to arrest us because she put the report gets stolen, Like so she was just cognitive enough to be really, really difficult through all of this.
Speaker 1:I mean, I could go on with a hundred stories like that.
Speaker 2:Yeah, one of my pet projects that I eventually would like to do is to do some training for first responders, and I understand that I don't understand the first responders job.
Speaker 2:I'll be the first one to admit that they have a very difficult job and they have to do it a certain way and so that they sometimes are resistant to anyone you know, saying okay, well, but certain, you know, certain parts of the community need a different approach.
Speaker 2:If you approach someone with Alzheimer's or with you know, with you know, certain other disabilities, that if you approach them in the same way that first responder typically approaches, which tends to be fairly aggressive, that can result in very negative things. Or even responding to things like, hey, we have to disable this car for the safety of our mom. That seems like, if they, you know, that's certainly something. If they got a regular call that said, hey, my kids are disabling my car and you know, and stealing parts of my car, any first responder would probably say, hey, that's criminal, but you know there's context of it, and so I've not had much success yet with the training of first responders, but I do think that that would be a nice addition to their training to say, okay, let's look at to see whether there's any signs of dementia, of Alzheimer's. You know of significant mental restrictions that would impact how this person's going to respond to your approaching them.
Speaker 1:Yeah, well, even then we eventually found the right person within the police unit that does. But then even then, like I talk about in the book, when we had my mom in the ER being evaluated by different psychiatrists, they would come back and say she's fine, what are you talking about? Because a lot of people with dementia, they can rise to the occasion and my mom had worked in healthcare hospitals, she knew to throw around the HIPAA word and she, I mean again so. So I literally had trained psychiatrists and doctors and professionals saying, well, why is your mother here? She seems perfectly fine.
Speaker 2:And so that's when I whip out the letters and the documentation and, oh my gosh, it was maddening yeah that can be particularly difficult for someone that was probably, you know, very educated and well-spoken, like your mother, because that doesn't always go away and they can cover quite well and, you know, depending on the type of dementia we see that often with something like Lewy body dementia, less with Alzheimer's but depending on the person, they might have those skill sets, those personality skill sets, to be able to cover and sort of, like you say, rise to the occasion. That can be much more challenging because you know if the people at that particular time don't see it but you say, okay, but these are the it's not safe or not consistently safe. You know, right now she's rising to the occasion but at you know, 3 am she might try to, you know, go out and get her mail and then get confused and wander away from the house.
Speaker 1:Yeah Well, she was hunkered down in her house, her house, but she would get up in the middle of the night and yell at the coyotes and try to go out there and tell them to go away. And then she was opposite of my stepmother, so my stepmother's in Iowa, and we said, hey, she has aphasia. And we're like, hey, you probably should stop driving. She's like, okay, here's I. Literally I'm sorry. There's a million, a million stories. And finally, when we got my mother through the psych ward and admitted to a memory care unit and she was still upset with us and whatever, but she got on the right meds, the right meds for anxiety, the right meds for she's not on that many meds but she's on the right mix of meds, so she's more even keel because like anger and feisty and assertive doesn't even begin to.
Speaker 2:You know, fully encompass how my mother was and you know I know some people are, are uh get nervous about and and you know we we certainly wouldn't want to have meds that I'm sort of zombie somebody out. But there's a difference between that and, you know, kind of getting taking that edge off where they're overly aggressive or their behavior's there, and sometimes meds can be very effective with regard to that. It's just sort of monitoring that and that's what I think that you know, you're saying that you do, is to make sure that it's the right, you know it's the right levels and the right amounts and the right drugs that still allow her to live her life but kind of take that edge off where she was, you know, more aggressive.
Speaker 1:Yeah, well, this was at a behavioral health facility for elders in New Jersey, that with a highly trained geropsychologist, or what. I mean there's so many specialties, but I mean, yeah, he worked the magic. Whatever he did, it worked and it helped, or what? I mean there's so many specialties, but I mean what? Yeah, he, he worked the magic. Whatever he did it, it worked and it helped. But I mean she still was mad and upset and I'm not going to memory care and wouldn't get out of the car when we got there. Like I mean again, like the stories go on, continue to go on.
Speaker 2:I think their listeners are going to be very you know that this is relatable to them a lot. A lot of people are dealing with family members. That it's hard, you know it's particularly hard. One is that I think that as we age, none of us imagine we're going to get to. You know, we kind of imagine we're going to retire and then live happily ever after, and that's kind of the story that we're told, that we're just not prepared for that. People. That's kind of the story that we're told, that we're just not prepared for that. People aren't prepared for the idea that there could come this stage of life. And then, secondly, the person. While they might not have been prepared for it, they also now have limited ability to adapt because of the changes in their brain chemistry. And so I always tell folks, especially when it's a husband and wife, and the spouse is saying, oh well, my husband's just grumpy, this is just the way he is, and it's like, okay, well, it's more than that now, once there's been a diagnosis of Alzheimer's or dementia or something like that, but it can be.
Speaker 2:I think people will relate a lot to the story that you're telling. With regard to your mom, I have a funny story that you mentioned about your stepmom and that she was very compliant and so growing up my dad was very dominant and he did it his way and we all kind of complied. And I remember at one point several of my siblings were working with the law office and at one point my brother said to me if we ever have to take dad's keys away from him, I'm not doing that, you can do that and we kind of had a laugh about it. What's funny with the story is is that when he got to a certain point he lacked confidence and he chose to give up his keys and sell his cars. He said I'm just not driving anymore, and I would have never guessed that in my entire life.
Speaker 2:Because he loved driving, he loved traveling. It was one of his favorite things to do. We as a family drove all over the country as kids in a motorhome and he just loved that travel. I think he loved the travel more than the destination, and the fact that he voluntarily gave up his keys was a huge surprise to me, even to the point where I was saying, dad, you can still drive, you can go to the grocery store. And he's like nope, nope, not doing it anymore. I was like OK, so you never know what to expect, and you might have the very, you know, gentle parent that all of a sudden becomes very stubborn with the onset of some memory issues.
Speaker 1:Yeah, and she was. I mean, it's losing your independence right for driving, and she's fiercely independent and then being in the sandwich generation, so at the same time we're trying to take the car away from my mom, I have teenagers that are getting their license and having fender benders, and you know. So we've got all this going on. And then again, when I mentioned my mom was in behavioral health for the psychotic break and trying to manage the meds, and then within the year, my daughter is in behavioral health for anxiety and depression. So I mean, it's literally the sandwich, you know, is I'm in the sandwich, the meat of the sandwich.
Speaker 1:And then the other thing I was going to talk about is so my mother had all of her documents done. She, you know powers of attorney, trust, will, everything, and so then I then turned my focus on my dad in Iowa and I'm like, hey, dad, we're going. You know, just just check in here. Do you have all your stuff done? No, not a single document. And he's 80 and not a single.
Speaker 1:And I'm like, wait a minute. But he said, no, I'm not doing it, because if I do my will I'm going to die and I'm not going to do it. So I'm like, okay, great. So then I fly to Iowa and I hire my own elder care attorney and I tell him I'm like I'm going to meet with this guy because the states are everything's different, laws are different in every state and I just need to know what's coming because I'm going to prepare even if you're not. And then eventually he but again, it took 18 months to get him to come around to saying, okay, yes, you know, I agree that we should do this. I mean so then I started on that, you know.
Speaker 2:That's so important. And so if you're, if you're the child, if you're a family member, if you're, you know even yourself that don't have those legal documents. I talk about the lifetime documents, and then you know the after death documents. Lifetime documents can be your financial power of attorney, your health care proxy, maybe some privacy waivers, maybe a trust, but the idea. Those are so important and it changes when folks come to see me in a crisis, and a lot of people wait until the crisis until they come to see me. The cost, the effort, the anguish, the time that it takes everything is easier and smoother if they have those documents in place before the crisis, and if they don't, it can increase the cost and the time to do planning and to get things in effect. Sometimes we end up having to rely on the judge or the court to order the right person, and sometimes, if there's at all sort of a family dispute, the judge might just take a stranger to make those decisions, and so it is just so important to get those things in place before the crisis.
Speaker 1:Yeah, and I also had the sibling issue. So my sister and I I didn't speak to her for two years when we were going through this because she was being difficult and she said, well, you deal with it, I'm not dealing with it, but then proceeded to tell me how I was doing everything incorrectly and badly and poorly. And yeah, and I have a brother, but he had, he had moved away and kind of wasn't really social with the family anymore. So what my older law attorney in LA said? He goes, he's like you fit the mold One has their handout, one is checked out and one's left with doing everything, usually the eldest daughter, which, hello, that's me. So that's where I am.
Speaker 2:Yeah, yeah. So talk to us a little bit more. I know this is a big issue for lots of folks, but the stress of that sandwich generation and you know we talk about that it's been around for a bit, that that's been a conversation. But I think it's one thing to be the sandwich generation when you're just trying to make sure you keep an eye on your elderly parents, but it's another when you throw in the dementia diagnosis and so that adds a whole different level to a sandwich generation conversation. So tell us a little bit more about the stress associated with that.
Speaker 1:Where do I begin? You know I had the distance had, so I'm fortunate that I am a communicator and I have resources. So, I mentioned, my aunt has been a nurse for 50 years, so she's my medical confidant. My husband has been a CPA for 40 years and so anything to deal with taxes or taxes or finances or accounts like he's my go-to guy. And then I I have, you know, a friend that's a financial advisor that helped with all that, and we're lucky that my mom could not afford to stay in her house, even though she thought she was a gazillionaire 20 times over in her mental state. But once we sold her house in Los Angeles, right at the pandemic bubble, she sold it for a lot of money and so now we're able to take care of her and she can be in memory care, which is so expensive and that to me takes a huge, huge load off is that she's got the money to pay for it Because, as you know, medicare does not pay for long-term care and you're either wealthy enough to pay for your own care or you're poor enough to qualify for Medicaid and sick enough or, you know, the forgotten middle is the one in the middle dealing with children and parents and you're in your the height of your career, trying to experience and build, you know your nest egg, and then everything goes sideways because your parents are not behaving normally and people don't realize memory or dementia is not just memory loss, it could be behavior, it could be mood, it could be executive function.
Speaker 1:So people don't recognize it because it's not. You know, mom forgot my birthday. I mean, it's so much. It can be so much more than that.
Speaker 2:Yeah, I did want to clarify one thing that you said as far as Medicaid. Like you say, medicaid can pay for long-term care where Medicare does not. It is the reason why you said that correctly. What I wanted to clarify was and it's particularly because it's something that we do in our law office is that we help people not have to go into that you had mentioned. You're either rich and you can afford it, or you're too poor and you can qualify for Medicaid and everybody in the middle.
Speaker 2:That's what one of the things that lawyers like I do is we help people find those ways within the law to protect their assets and still qualify A lot of what we do. So I hear this out and you know, occasionally, if there is a conversation about protecting assets, it's always oh well, you have to do it. You know, five years in advance, or you have to do it. You know you do it this certain way. A good portion of the planning that we do to help people so that they don't become impoverished is what I call crisis planning, meaning that we don't actually complete the planning until the crisis occurs, and in pretty much every state, there's going to be options for that. Now, they're not perfect options, but it is one of those things that I want to make sure there's not.
Speaker 2:There's not there's that sort of a myth that you have to be impoverished to qualify for Medicaid. There's many ways to protect those assets in pretty much every state in the United States and still qualify in their legal ways. There are ways that are built into the law or have built in through the court process, where we've, you know, through court proceedings and things like that, we've created these paths of being able to protect assets and still qualify for Medicaid, which I think is very fair, because if you think about it, you know if you have open heart surgery, it's probably going to be fully covered right by Medicare and by your supplemental insurance. But if you get Alzheimer's instead of heart disease, then they say, well, you have to go broke first. Well, that's where an elder care attorney can kind of level the playing field and make sure that you don't have to become impoverished because you got the wrong disease, and so it's just something I wanted to clarify, particularly because it's something that we do in our law office.
Speaker 1:No, well, absolutely. And it's so different state by state, right. So you have to be aware and people are again, people don't plan and they have their perception. Well, I don't, I don't want to talk to an attorney. Attorneys are expensive. I'm like well, you're going to end up spending a lot more in probate or in grief or in you know lot more in probate or in grief or in you know you need to find the people that are educated in this field to walk you through the legal process and understand what documents you need. That's why I tell people don't go to LegalZoom to create your legal documents because the nuances and the like you need.
Speaker 1:That's why my whole book talks about use, build your network, build a team from friends, neighbors, family and paid professionals right. So it's so important to get the right resources. Otherwise you're going to create a bigger problem for yourself down the line.
Speaker 2:Yeah. So that's one of the things I always like about my work within this field is that it is usually the cheapest option. So we say, okay, lawyers are expensive, absolutely, and we're not an exception to that. We are expensive, but it's usually the cheapest option because otherwise it's private pay until you run out of money, and that's not ideal. I want to hear more about the book I'm really interested in and the idea that it's a guide for folks and helping them through these stages that you went through and you had all these resources and all these friends and family that you could rely on. A lot of families don't have that, so I think your book can really help out. So the book again is Diagnosis Dementia, your Guide for Elder Care, Planning in Crisis. Talk to us about how your book can help families that are just starting out on this journey.
Speaker 1:Sure, it's Elder Care Planning and Crisis Management, because, yes, we encourage people to have the conversations and to start early, but, as you know human nature, people just are going to avoid what they don't want to deal with, and so you often end up in a crisis. So my book is kind of a combination. It's a it's prescriptive, so it kind of talks about what to do and how to do it and why to do it, and it's also a memoir, because it talks about everything I went through my mom, my dad, my step-mom and all. So it kind of it brings it home Like this is this is probably the worst possible scenario, but this happened to us and this is what can happen and this is these are the signs we missed and this is what we learned. And so it's it's it's a very. It's very well organized. It's organized by section, by chapter, and that the the table of contents is very clear. So this is a little book. It's like you can it's very you can stick it in your purse while you're at at the doctor's office waiting and review the section on legal or the section on medical or the section on finance, and also the resources that I usually send people to are.
Speaker 1:You probably know the AAAs. So the Area Agencies on Aging are all over the country and they're federally funded through the state and they are a wealth of resources for people to kind of figure this out. And then the other thing that I really found or learned that's so valuable are these aging life care managers, who are private pay but they are social workers and nurses and they know the system. You have to learn the system and the one system I had to learn that I didn't want to learn was Medicare for my mother and all of that. That was so, so horrible. I'm still, I know enough to be dangerous, but it's very, it's still very scary, the Medicare piece Anyway. So I like the AAAs and I like the Aging Life Care Managers as like the immediate kind of resources to kind of start to figure out what to do and how to do it.
Speaker 2:That makes sense. We talk about it as a maze, we call it the elder care journey, but really it's the elder care maze and I actually have a sort of a picture of all the different bad things that can happen and it kind of, when you lay it out on a picture, it kind of looks like that old kids board game, Chutes and Ladders, where you think you're making progress. You're almost to the top, and then you slide all the way back down to the beginning.
Speaker 1:That's perfect. Yeah, I love it.
Speaker 2:Yeah, no.
Speaker 1:I mean we went through some chutes and then, you know, worked our way back up the ladder. Yeah, that's a perfect analogy.
Speaker 2:Talk to us a little bit about the importance of the caregivers. You know and you were. You had an extra struggle because you were at least at the caregivers. You know and you were. You had an extra struggle because you were at least at the beginning and still to some extent have been a long distance caregiver and trying to go back and forth and set things up where you're not living in the same state. But the importance of taking care of yourself, of that self-care, because it can be overwhelming and the person that you're trying to help won't be helped if you get sick, if you break down. So the importance of caring for yourself and making sure that you're not overdoing it yourself when you're trying to care for a loved one with dementia.
Speaker 1:Yeah, absolutely. I've always turned toward exercise to manage my stress and like physical and mental stress, and so that has been something I've done my entire life. So I was never an athlete never. I mean, I played on a couple little teams in junior high or something, but I was not, you know. So I but I have always made it my priority to exercise at least 30 minutes a day, like four to five days a week, because that is my, that's my reset, that's my clarity, and even with every one of my five pregnancies, I worked up doing aerobics or worked out right up until the day of delivery, and then I was back in, back at it like a week or two later because, again, that's my, that's my absolute go-to.
Speaker 1:And everyone's got something different. Maybe it's music or maybe it's cooking or maybe it's reading a book, but, as you probably know, 30% of caregivers die before the person they're caring for, and so the one place that I found that's absolutely fabulous is daughterhoodorg, and I am a circle leader for daughterhood, so it's a virtual support group that's national, but I also one of the first support groups I ever went to was through an elder law attorney in New Jersey, because they offered one, and so AARP has them, and the aging care, aging, I'm sorry. The AAAs, there's the Y, there's plenty of support groups out there, some churches, so find a support group as well, because you are not alone and everybody wants to know that they're not alone and that you're telling your story in the book it makes it much more readable that way, if you're just trying to give tips and advice, that really it's harder to take in if you don't understand the context of it.
Speaker 2:And I think, being relatable and people you know, having you know similar experiences, or even sometimes, excuse me, lesser experiences, where they say, okay, well, she had it even worse than I and she got through this, so it's going to be okay I think that's a really important part of your book, in addition to the you know the tips and the guide is telling your story is part of it, so I commend you on that.
Speaker 1:Yeah, no, I mean, like I said, it's just, it's unbelievable, this stuff that we were just in just disbelief of what we were going through. And then I gave a talk not long ago and the one woman on there she said you know, nicole inspired me to keep going, because you know you're not alone.
Speaker 1:You know, yes, it's difficult and everyone's different, but you know there are people out there going through the same thing. They understand, they relate and there are. There is help out there. But you do have to take a little bit of extra effort and energy, which you don't really have, but it's worth it.
Speaker 2:Yes, Very good. Well, as we start to wrap up here, can you kind of give us some key takeaways from your book and what what people should expect if they buy your book and how that would help them with their family?
Speaker 1:Yeah, well, all through the book, I say have the conversation, start the conversation, approach this subject, because I had the same thing. These are my parents. I don't want to ask about their finances and their health and that's very personal and that's their thing. It's not my thing. But I had to steal documents from my mother's office and rush to the library to copy them, and then I wish I would have stolen more things, I mean, but it was very, very difficult because I felt like I was betraying her, I was being a bad child.
Speaker 1:But it in in the more time you have. You're going to need time because you can't show up for Thanksgiving and at the table, be like, hey, let's talk about death, and it just doesn't work that way. So start the conversation. And then what I've had people tell me is, if you're listening to my right to me right now and you read my book, you feel like you're talking to me, because I definitely am a very conversational tone. Like I tell people, I'm not a physician, I'm not a lawyer, I'm not a nurse, I'm not a social worker. I am a daughter, talking from the daughter perspective, sharing exactly the frustrations I had and what we did, and then what showed up next and how we worked together to handle it, and there were a lot of tears. I mean a lot of stress and I mean, like I said, I am still in it every day. I am living the life of the whack-a-mole caregiver because literally something comes up every couple of weeks that I did not even expect, and then I have to figure it out.
Speaker 1:Well, tell us about where we can find you on social media and where we can get more information and stay connected with you books on Instagram and my handle is at Dementia Book Review and so once I started reading more, I started posting my little reviews, because what I found was there are a lot of books out there talking about how do you interact with someone dementia, how do you behavior, how do you alter your behavior, how do you care give and I was like, yeah, that is all important, but what about getting the legal documents and the financial documents? And my dad had stock certificates from the 80s in his drawer and I mean you need to figure that stuff out and ask the questions and investigate, but you need time. So, anyway, so, dementia Book Review on Instagram. And I love LinkedIn, nicole Smith, type in or just go to my website and then that links you. But I definitely am a connector and a speaker and I love LinkedIn, so connect with me on LinkedIn if you're on LinkedIn.
Speaker 2:Very good. So the primary website is NJS sorry, I'm sorry NJSmithBookscom with an S at the end and the book title is Diagnosis Dementia your Guide to Elder Care Planning and Crisis Management. Thank you so much, nicole, for coming on, and we appreciate you with all your insight.
Speaker 1:Thank you. I learned some things today too. I appreciate it.
Speaker 2:Now, if you enjoyed this podcast, don't forget to subscribe. We're on anywhere you can find podcasts, or, if you prefer, you can go to our website at manorlawgroupcom, or we're also on YouTube. Thanks, Thanks.
