Episode 85

Meet Dr. Wolfgang Spangenberger – Author of The Unexpected Marathon: Your Guide to Long Term Caregiving

Lisa interviews Dr. Wolfgang Spangenberger, a former Chief of Surgery and Oncology Specialist. He has also worked as a Mediator, helping families navigate the emotional challenges of a serious health crisis. Drawing on his experiences, Dr. Spangenberger has authored several books to support caregivers and their loved ones, offering actionable guidance for facing long-term care. In today’s episode, Lisa explores Dr. Spangenberger’s latest book, The Unexpected Marathon: Your Guide to Long Term Caregiving, due out in January, 2025. His new book addresses the growing need for supportive resources for family caregivers, providing strategies to prevent caregiver burnout, how to create routine, less stressful environments, and manage the physical and emotional toll of caregiving, plus much, much more.  Don’t miss this very informative episode!

Mentioned Resources:

For more information and how to access Dr. Spangenberger’s free, extended excerpt and worksheets from The Unexpected Marathon, please visit LTCMarathon.com

About the Guest:

Dr. Wolfgang Spangenberger is a pioneering figure in minimal invasive surgery and a former Chief of Surgery, with more than 30 years of experience as an Oncology Specialist. In addition to his medical career, he has worked as a Mediator, helping families navigate the emotional challenges of a serious health crisis. His latest book, The Unexpected Marathon: Your Guide to Long-Term Caregiving, addresses the growing need for supportive resources for family caregivers.

About the Host:

Author Lisa Skinner is a behavioral specialist with expertise in Alzheimer’s disease and related dementia. In her 30+year career working with family members and caregivers, Lisa has taught them how to successfully navigate the many challenges that accompany this heartbreaking disease. Lisa is both a Certified Dementia Practitioner and is also a certified dementia care trainer through the Alzheimer’s Association. She also holds a degree in Human Behavior.

Her latest book, “Truth, Lies & Alzheimer’s – Its Secret Faces” continues Lisa’s quest of working with dementia-related illnesses and teaching families and caregivers how to better understand the daunting challenges of brain disease. Her #1 Best-seller book “Not All Who Wander Need Be Lost,” was written at their urging. As someone who has had eight family members diagnosed with dementia, Lisa Skinner has found her calling in helping others through the struggle so they can have a better-quality relationship with their loved ones through education and through her workshops on counter-intuitive solutions and tools to help people effectively manage the symptoms of brain disease. Lisa Skinner has appeared on many national and regional media broadcasts. Lisa helps explain behaviors caused by dementia, encourages those who feel burdened, and gives practical advice for how to respond.

So many people today are heavily impacted by Alzheimer's disease and related dementia. The Alzheimer's Association and the World Health Organization have projected that the number of people who will develop Alzheimer's disease by the year 2050 worldwide will triple if a treatment or cure is not found. Society is not prepared to care for the projected increase of people who will develop this devastating disease. In her 30 years of working with family members and caregivers who suffer from dementia, Lisa has recognized how little people really understand the complexities of what living with this disease is really like. For Lisa, it starts with knowledge, education, and training.

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Transcript
Lisa Skinner:

Lisa, welcome everyone to the truth lies and Alzheimer show. I'm Lisa Skinner, your host, and I am very excited to let you know that I have a very special guest here with us today. His name is Dr Wolfgang spangenberger, and in just a second, I am going to tell you a little bit about him and introduce you to a brand new book that he has written that I can't wait for him to tell us all about it. So just a little bit of background information on Dr spangenberger, he is a pioneering figure in minimal invasive surgery, and a former Chief of Surgery with more than 30 years experience As an oncology specialist. So he specializes in cancer. In addition to his medical career, he has worked as a mediator, helping families navigate the emotional challenges of serious health crises, drawing on his experiences, Dr spangenberger has authored several books to support caregivers and their loved ones, offering actionable guidance for facing long term care. His latest book, The one that I can't wait to hear about, is called the unexpected marathon Your Guide to long term caregiving addresses the growing need for supportive resources and family caregivers providing strategies to prevent burnout, create routine, less stressful care environments and manage the physical and emotional toll of caregiving. Wolfgang, as I will refer to him, now, speaks widely on these topics, connecting with audiences in both German and English. Now, welcome to the show, Wolfgang. I am so delighted to have you here today, and I'm really, really anxious to hear all about the new book, The unexpected marathon. So why don't we start off by asking the obvious, because you've had a long, long, distinguished career in both surgery and in mediation. So what inspired you to transition from a traditional medical role into becoming a mediator and an author?

Lisa Skinner:

Dr. Wolfgang Spangenberger: Thank you very much that you invited me and they have the opportunity to talk here. Yeah, that is a good that is a good question, why mediation and surgery at the first view possibly that doesn't fit together, to be honest, that was more than one reason. There was some little reasons, like little stories which I saw during my career. So for example, I dealt a lot with disorder, eating disorders, and we could cure this youngsters, and we could help them. But to be honest, whatever we did, I missed at the end of the day, this, this glare in their eyes afterwards. Yeah, they were the eating problem was solved, but still, they are obvious that there's more to this than just surgical or medical intervention. That's just as one example. Another example is just the realization that 50% of mobid Obesity ladies were in their youth sexual abuse. So there's obviously quite a limitation to medical intervention when you want to help these ladies. But in my everyday life, what brought me then, really finally, the to the point to address the helper was the fact when I told the patient, for example, a disastrous diagnosis like cancer, I could see that the patient went in a life crisis. No, no, no, question about it. I expected that. But at the same time, the relatives went in a life crisis as well, and that was never addressed before. Yeah, so it was. Not only the patient or the loved one, yeah, which were in a crisis, the person who wanted to help or was looking after the after the relative went in a life crisis as well. And at the beginning, I have had no tools to look after them or to help them, or to give them any advices. That was the reason why I went to the area of MIDI of mediation. Medicine in general, is creating or is producing problems, or has to solve problems when a lot of conflicts are facing. Yeah, they are there all the time before, but they're excavated during that special situation, maybe a cancer, maybe a dementia,

Lisa Skinner:

yeah, and it seems to me that it appears that it's a huge leap to go from you know, can't be a cancer physician to a mediator on obesity to long term care. And in your latest book, The unexpected marathon, your guide for long term caregiving, you do mention that caregivers find themselves in a quote, unquote marathon for life they've never trained for. What are some of the most common challenges that you observed among those thrust into this role, and I want to emphasize that term, because most people are thrust into a role that they never, ever intended to sign up for. When you agree with that, yeah, absolutely,

Lisa Skinner:

Dr. Wolfgang Spangenberger: I agree absolutely, yeah, with that. No, nobody is trained for that. Yeah. And even I have to say this, this book is written for non professionals. Mainly is addressing non professionals. So I'm not addressing doctors or nurses. They can read it as well, and maybe they get some nice aspects as well, but I'm mainly addressing the non professional person, okay? And the first question is always, what do I have to say? What can I do? I'm not trained for it there. There's a big mountain in front of them, and they don't know how to find their way up. Yes. So the main thing is that, like long term care, is human bond with commitments, that is the first thing which we have to realize. And with this commitment comes responsibility, and then, unfortunately, expectations as well. These are expectations we have of ourself as well as the expectation of others. And so we have always to ask if these expectations then appropriate in this situation or not. On the other hand, you cannot please everybody in a situation like this. Yeah, you cannot please the needs of the patient, the police, of the expectations of your surrounding, and maybe the expectation of yourself, because if you want to please everybody, if you try all the time to keep all doors open, then you're possibly ending up In the hallway and you have nothing at all. The main problem, I think, is that the beginning of long term care feels like a bottleneck. Whole Life seems to be reduced to one problem, and this problem needs to be solved, and then at the same time, some self doubt starts to gnaw on you, so you're not sure anymore. They had a lot of thoughts. It's like a carousel. What's starting in your head, and are you prepared for that is one of the questions which you suddenly will ask yourself,

Lisa Skinner:

now, have you personally had an experience with a parent or a relative or a loved one that has lived with Alzheimer's disease or related dementia that kind of I don't know, influenced you or inspired you, oops, to want to kind of take a different path in in your career.

Lisa Skinner:

Dr. Wolfgang Spangenberger: Yeah, it influenced me. I was maybe. Assured by that, what, what, what, what's happened to me, or what's what I experienced? It was my my father, yes, so my mother died suddenly, and my father didn't have Alzheimer disease, but he has had a beginning dementia. So I would say that way, he have had a very good mask for a long time, but when my mother died, this mask just broke apart suddenly, yeah, so he was suddenly not anymore able to live by himself, to organize his daily life. So my family, I and my family have to take over care for him, so we took him in the house like, but like, you know, the dementia progressed, and then some additional medical problems occurred. So that I would call it, the possibility of outpatient care came to their limits. Yeah, so it was not so much a dementia. He has had some heart problems as well, so that he finally ended up then with professional help, so that he needed to go in a professional facility, and then there, unfortunately, he died. So I went through all the steps. My journey with my father was like three years long. So it was not that long. So other people are living with a loved one who has Alzheimer's disease or dementia for much longer time, but for three years. Yeah, I experienced that by myself as well. Yes,

Lisa Skinner:

what would you say is the most valuable lesson that you learned seeing and personally experiencing the role of a caregiver to your father living with dementia probably was a completely different perspective for you than seeing it from a medical standpoint, actually, the day to day responsibility and challenges that caregivers face. It's a tough job, and you know, as we all know, those of us who have experienced that, it can take a significant toll on a person's identity and our lifestyle. Can you share some of the advice that you offer in your book on balancing one's own needs with the demands of caregiving based on your what you learned from your experience? Yeah?

Lisa Skinner:

Dr. Wolfgang Spangenberger: Yeah, I needed, I think the most important issue for myself was to realize that my father was changing. So I needed to say goodbye very early to the Father I knew so there was I have had to to acknowledge that I'm now living with a new person, yeah, and I needed to be curious about him now, yeah. So what are his abilities? What can he do? So specifically, when I spoke with my own kids, and I needed to prepare them for this situation. I told him, Be curious, yeah, just look what's happened and focus on on his strength and not on his weaknesses. Yeah, so let's do what he can do. So my father liked music, so music was still, for a very long, long time, an issue which he can where he can socialize, for example, with my kids. Yeah, it's quite it's quite funny that people can play an instrument for a very long, long time. Yeah, even with Alzheimer disease or with dementia, obviously that is a completely other structure in our brain which help us to do to make music, and we can even communicate with music, yeah, the issue about it is that this has to be music which has to be very familiar to this person. So you cannot start with new songs, or so, yeah, he will not understand. But you can give other old songs, which he know by heart, can give a new meaning, and even say, you can communicate with that. So for example, for example, arividgy Roma, could say, I want to say goodbye, yes. So without saying it just that's singing or assuming it okay,

Lisa Skinner:

oh yes, and what you're saying is so so true. We talk about it all the time on my show, music has got to be probably one of the most powerful tools we know of to trigger our. Memories. And like you said, our our past memories, because our short term memories malfunction, and then we're pulling from our our long term memories, and that's where we're storing all of our musical history that be that retains familiarity for all of us. So that's a very powerful tool that we have in our back pockets to use to help people living with dementia reconnect with their lives.

Lisa Skinner:

Dr. Wolfgang Spangenberger: Yeah, yeah. I dedicated a whole chapter in my book to the issue of music, oh God, as well as the issue of humor. Yeah? So, yeah, can you make a joke? You still can make a joke. Yeah, yeah. You have to be a little bit careful. But when both can laugh about something, what's happened that makes life much more easier.

Lisa Skinner:

Let me ask you this Wolfgang, because this is another thing that I talk about frequently on my show, and I've talked about it with a lot of people who have gone through the journey of dementia with a loved one or somebody that they're caring for. And one of the things that I discovered early on in my professional career is dementia, I think, is one of only diseases that I'm aware of where people have to experience loss twice, and you just said it, first you lose the person you need, you you knew, and then they go away, they pass away, and you lose their physical body. How did you process that with your father?

Lisa Skinner:

Dr. Wolfgang Spangenberger: Just a quote by Nancy Reagan comes to my mind. Yeah. She said Alzheimer's disease is like a very prolonged Goodbye. Oh, it

Lisa Skinner:

is yes, yes. So, and

Lisa Skinner:

Dr. Wolfgang Spangenberger: I think I have nothing to add to that, yes. So really, that's it, yes. So it's not a sudden goodbye. It's a very long process where you say goodbye to your loved one.

Lisa Skinner:

Do you agree with what I just said, that it's like going through loss twice with dementia, yeah, yeah, yeah, yeah. You know this about me, but I've had eight family members that have lived, yeah, and a dog, believe dog that lived with the canine cognitive dysfunction.

Lisa Skinner:

Dr. Wolfgang Spangenberger: And no, I didn't have that.

Lisa Skinner:

So, yeah, I totally agree with that experience, that you definitely lose them twice, and you have to allow yourself to grieve both times to process that full experience. Let me ask you this in your book, you speak to the importance of recognizing burnout in caregivers, which is just a real chronic problem that we know about. As a matter of fact, one statistic tells us that a lot of caregivers to people who live with Alzheimer's disease and related dementia die before the people living with the disease because it's such a stressful place to be. So can you share with us, perhaps as a physician, what are some early signs of burnout, and how can caregivers proactively prevent it or minimize it or avoid it that would be helpful to our audience, because I'm sure that a lot of people that are will be listening to to this interview could benefit from that information.

Lisa Skinner:

Dr. Wolfgang Spangenberger: Yeah, yeah, this is big topic. It's more or less one whole podcast. I have to keep myself a little bit short now, yes, it is. It is well known in the literature that long term caregivers have or 70% of all long term givers have medical problems. Yeah, in what kind of they're getting more often sick, they have more complaints. Yeah, maybe just some easy ones, yes, like a little bit headache or maybe a sleeping disorders. And it can get more and more severe in this in this direction, one of the problems is now I'm speaking as an as a doctor, yes, coming from medical field, the first. Problem is we have no scientific definition of burned out. Ah, that makes all the statistics very fragile. Yeah, we use it in our common language. The politician are using they're using it in healthcare system everywhere. But there is no scientific definition about this term. What is burnout? It is obviously a conglomerate of symptoms. So your question is, maybe, what are this kind of symptoms? How does burnout express itself? I would say when you have but it's not only one of the systems. So several system has to come together, yeah, otherwise, it gets a little bit confusing. So at the beginning you have no feeling of energy anymore. Yeah, you have had maybe a good sleep, a good long sleep, but in the morning and you still feel tired. Yeah, your legs are heavy and you don't know how you should get out of the bed now, yes, you you maybe experience a severe frustration. Yeah, you're frustrated with your whole situation. You experience something like fear, like anger, yes. So you have maybe that, that you experience, that you are very irritable, you are easily hitting the ceiling, yes. So just with a with a little onset, just with a little trigger, maybe you feel isolated or lonely? Yeah, and it is not only the feeling, but you want to be left alone. So you maybe have an appointment with your friends, and you say, No, I don't want to be bothered. It's too much for me today. Yes. So this kind of withdrawal of isolation is a sign, a possible sign of burnout. I said it always like in the medical field, one of the alarm signs for me was always if one of my colleagues or one of the nurses described the patient or the loved one as a burden. Yeah, they went in this profession because they wanted to help, and suddenly, every patient who went through a door was a burden for them. There was no looking forward anymore to help. No, it was a burden for them. You see only problems. You don't see any solutions anymore. You see only problems. One problem is hunting the next one, yeah, yes, and it's like a carousel suddenly, yeah, and it's difficult for you to relax. Yeah, you cannot go home and think about something else. No, it's always still in your mind. Maybe your desire for or you have no sexual desire anymore. Yeah, you have no interest in the other gender. Yeah, eating is maybe for you just calorie intake, but you're not enjoying it anymore. You know that you have to eat, but you would not go in a restaurant because there's a terrific meal now. You just want to have your calories that you have that the machine burns again, yeah. So that would be easy to recognize symptoms of a burnt out syndrome,

Lisa Skinner:

absolutely, and maybe I can

Lisa Skinner:

Dr. Wolfgang Spangenberger: add a little bit to that, we can even consider ourselves when we look a little bit at ourself. Are there risk factors of burnout? And unfortunately, there are many, and one of this is, I call it the burnout character.

Lisa Skinner:

So that a little bit on that, yeah, that

Lisa Skinner:

Dr. Wolfgang Spangenberger: is a person who has a lot of empathy, who wants to help, very often observed in nurses. Yeah, they want to help. They know that they're getting sick because of them, but they keep going despite the fact that they know that they're getting sick at that moment, like a wheel which is turning and turning and difficult to interrupt,

Lisa Skinner:

yeah, like a person on a that can't get off the hamster wheel, right? Exactly, yeah,

Lisa Skinner:

Dr. Wolfgang Spangenberger: because you have so much empathy that you can't stop Yeah. So empathy is good, but at some point it can be too much, and then I call it a burned out character.

Lisa Skinner:

Well, what are the greatest aspects about your book that I think is 18? Typical from many of the other caregiver books out there that I'm aware of is how you emphasize and stress self care. Yes, true. If long term caregivers give nothing to themselves, they have nothing to give to others. I think that's what you said. What are some key elements of self care that you recommend in the book? And we want to save a lot of it for people to read when they can purchase your book, but just to kind of give them a sense of some of your recommendations and proven techniques to help avoid caregiver burnout, because it's a very, very, very real thing, and I don't think people have any idea that it'll sneak up on them very, very quickly If they don't pay attention to these signs that you're referring to and understand what those signs are trying to tell them. So Can you expound on that for us? Yeah?

Lisa Skinner:

Dr. Wolfgang Spangenberger: So, yeah, we can consider ourselves like a battery. A battery what needs recharging from time to time. Yeah, a battery cannot run

Lisa Skinner:

forever, okay, great analogy, yeah, and that

Lisa Skinner:

Dr. Wolfgang Spangenberger: is self care. Yeah, self care is recharging ourself. Okay, so I'm saying you should not self sacrifice. You. You should have self care. And when you are doing well, your loved one, and your help will be good as well. And

Lisa Skinner:

you You offer advice and suggestions and recommendations on how people can can achieve that.

Lisa Skinner:

Dr. Wolfgang Spangenberger: Yeah. I mean, at first it's a little bit difficult, because our life is different, yes, and we all have different needs and we enjoy different things. So self care can mean to everybody something different Exactly. So that is maybe the first important step. So I can't, I can't say what self care for myself. Yeah, is self care for you as well? Yeah, you have maybe different aspects, but there are maybe some general advices. One would be for me that you should be able to say no,

Lisa Skinner:

oh yeah, that's I love that, that you should be able

Lisa Skinner:

Dr. Wolfgang Spangenberger: to draw boundaries, yes, yeah. And that is already one of the most important things, whatever this no means in your very specific situation, yeah, so self care, in my opinion, is that you are taking yourself seriously. You're respecting yourself, yeah, you're respecting your needs and your wishes, and you take some time out for this. You organize that in your daily life or in in your time schedule as well, because otherwise, like we said, you will get burned out.

Lisa Skinner:

And that's one of the biggest challenges I hear from caregivers and family members as well that you know that's easier said than done, because I just don't have time. But I think your suggestion is brilliant. You've got to incorporate that time into the schedule. It's It's critical. It's critical that you include time for yourself to come up for a breath of air, right?

Lisa Skinner:

Dr. Wolfgang Spangenberger: Yeah, take an oxygen shower, take a bath, whatever. Yes, but maybe two, two comments to that. Okay, number one, self care can be very counterintuitive. Yes. So, and that is where a lot of people don't think about it, that is already self care. So take when you go on an airplane. Every time when you go on an airplane, there is this nice talk by the stewardess at the beginning, yeah. In the case of of an accident, you take your oxygen mask first, and then you take on the oxygen mask to your child that is self care, yeah, it makes no sense when you put The mask on your child and you pass out

Lisa Skinner:

true. I love that analogy. It's so right on, yeah,

Lisa Skinner:

Dr. Wolfgang Spangenberger: oh, when your car is sliding on a slippery ground, you take your foot off the brake, yes, so that you get a new. Grip again. So very only what I want to say very often, self care is very counterintuitive.

Lisa Skinner:

Yeah, those are great points. Yeah, my next

Lisa Skinner:

Dr. Wolfgang Spangenberger: advice is, you should not manage your time. You should manage your activities. We all live on the same time schedule? Yeah, it's 24/7 can't change that, but we can change our activities.

Lisa Skinner:

Yeah, I'm going to shift gears for just a second here, because I want to speak to something that is very near and dear to me. It's what I practice person centered approach to care. It's what I'm certified in. I think it is the state of the art approach to successful dementia care and providing the highest quality possible life that that we can provide for the those who are living with Alzheimer's disease, and I noticed that's kind of a aspect of in your book that you also promote. So I want to ask you this question, because I think it relates to what I'm saying. You address how caregivers can set up an environment that's nurturing, not just for the people living with dementia, but also for themselves. So it's going to become a win win situation for everybody. What are some key steps to achieving this balance? And I'm assuming that you are referring to person centered approach to dementia care,

Lisa Skinner:

Dr. Wolfgang Spangenberger: not absolutely no, that's absolutely fine this person. Just keep in mind, I didn't write a book how to care for a patient with dementia. I wrote a book for the caregiver. Okay, so how you

Lisa Skinner:

it's interrelated, right,

Lisa Skinner:

Dr. Wolfgang Spangenberger: correct, but the focus is a little bit different, yeah, so I'm focusing on the caregiver. I'm I'm not so much focusing on the patient with dementia. Yeah, like I said, I've had patients with cancer as well. So you can apply what I'm saying. You can apply to this kind of group of patients as well. Well. My main contact of of dementia was in my family, but I've had patients with dementia as well. So I needed how to, how do you deal with them in a hospital? So, yeah, so it's a completely different story. Then suddenly, so my, my main address, or what I'm asking, is, what is the long term care doing to you, to you as a long term giver, that is my main focus. Not so much. Sure. I have some general advices, yeah. But the other people are possibly much more experienced because they're there's their specialist in Alzheimer or dementia disease, yeah, so, but my focus is on the caregiver. What is the caregiving doing to you? And one example is the Alzheimer's disease. So I just want to clarify that so that Nobody's expecting, let's say the wrong different content from the book, yeah. So I

Lisa Skinner:

think that they're intermarried, because when people use some of the strategies and techniques and tools of the person centered approach to dementia care, it benefits the caregivers too, because it minimizes the amount of stress that they're going to experience, because you'll see less combativeness, less anger, and these are all, as you have mentioned, a lot, of our approach to care, the effective way to approach Our caregiving techniques is also counter intuitive to our instinctive way that we want to react to some of these behaviors and situations that arise. So it definitely being equipped with a lot of that knowledge as a caregiver is going to benefit the whole entire situation, would you agree with that? I

Lisa Skinner:

Dr. Wolfgang Spangenberger: would agree completely with that. So I just wanted to make only once clear what, yeah, what the content of the book is. So people I'm addressing, yes. So yes. So I think

Lisa Skinner:

that you are saying that you. Just maybe in in a different not in an absolutely direct way, but the mess. The same message is there, right?

Lisa Skinner:

Dr. Wolfgang Spangenberger: I think so. I think so. Yeah, I would say you should always concentrate on the strength of your loved one. Don't, don't discuss the weaknesses. Yeah, no. Focus on the strength and use them. Yeah, one very important thing, I think, is remove distractions. Yes, distractions from the care, and try to avoid multitasking. So that maybe sounds silly and easy, but I experienced that very often, like in the hospital, yes, so just for a little story. So when I was, for example, finished with the patient and I told the nurses, okay, now you can, you the person the patient, can get dressed now, yes, and the nurse was very thoughtful, and she put all the clothes in a very nice order in front of the patient who has had maybe dementia. And consider that not as a multi task. Yeah. I just get dressed

Lisa Skinner:

totally with everything you're saying there, yeah? But

Lisa Skinner:

Dr. Wolfgang Spangenberger: for this person who is there, this is suddenly a multi task. Yeah, there is underwear, his shirt, his trousers, his socks, his shoes. Where should he start? It's

Lisa Skinner:

overwhelming for somebody with dementia. Exactly,

Lisa Skinner:

Dr. Wolfgang Spangenberger: okay, so that is what, what, what I mean by saying multitasking. We maybe need a new definition of multitasking. We have to go a little bit in this area of the patient, in his thinking, yeah, how he would approach it, so I maybe Hand him over just his underpants, and suddenly he has no problems to put them on, yeah? Because you know exactly where he starts. You give your your loved one, first the socks and then the shoes. Yeah, not at once, right? And suddenly the whole story possibly gets much easier. Absolutely,

Lisa Skinner:

that's a really great advice. Yeah, so I want to know about this, um, I'm intrigued by this. Your book includes the workbook component, yeah. So tell us about that. And how does that interactive element enhance the experience for the readers, and what was the intention or the hope? What do you hope they gain from completing the exercises. Why did you include that in your book?

Lisa Skinner:

Dr. Wolfgang Spangenberger: Yeah, that is maybe a little bit the history of my mediation as well. It comes here in as can So let's say this way I think every long term giving situation is unique, yeah, so it's very different. Difference from from from country to country, from family to family, and every caregiver is unique. We are all different. And you, you are the expert of your own life. So what I'm doing in the workbooks, I'm asking questions, and then you find your answers. I'm keeping a little bit back with general advices. Very often they fall short because you say, Oh, I live somewhere I cannot apply this whatever. Yeah, I agree with that. So I'm very careful in general devices, or to keep recipes, what I have is a whole bunch of questions I ask you these you give the answers and you find your own solution

Lisa Skinner:

cool. So

Lisa Skinner:

Dr. Wolfgang Spangenberger: to answer your question, that is the reason why I wrote the workbook.

Lisa Skinner:

Oh, I think it's going to be exceptionally helpful, because it'll help people retain more of the information that they read from the book, and I think also help them see how it can apply to the real world, to their real life as a caregiver for families just beginning this journey of long term care. What initial steps do you recommend that can help them adjust and prepare for this Uncharted. Third territory?

Lisa Skinner:

Dr. Wolfgang Spangenberger: Yeah, good question. Sure. I would have some general advices, and I can start with what I just said, with some questions, yes, with how you can adapt to such a situation. So at first I have to, I would say, you're not alone. You're not the only one who's going in long term care. Other people, I went through that too. So that is a challenge which we can master. So I think that at first gives you a little bit positive feeling. Then we go back maybe to your example, with dementia, with Alzheimer disease, and you say, oh, have no experience. I'm not trained. I have no clue what to do, then I would say, look, most of us have experience with raising child, raising a child or more child, a patient with dementia is going back in his childhood. So you have quite an expertise. You know exactly how to deal with a toddler. So this toddler is just a little bit older now, but the same things which you applied for raising the child, you can now apply as well, at first, intuitively, to this person with Alzheimer disease.

Lisa Skinner:

Well said.

Lisa Skinner:

Dr. Wolfgang Spangenberger: So you have, you have more expertise than you think. And then I would I think that is very important, because that is going back a little bit to our self care, and it is going back to the issue of burnt out as well. I will tell you start with a cold compassion. So everyone say, oh, that okay, so no, what the heck is that under normal circumstances, when we get a challenge, yeah, when someone tells us, oh, you should do that. You should take care of your father, your mother, whoever, oh, you're we are burning. Yeah. We are thrilled. Yeah. We push every energy in it okay? And that is good. That's fine, but you will get tired of that. Go another way. Go a different way. Consider now looking after your loved one is like learning a music instrument. It is like training for a difficult sports event here, the main focus is that you have to do whatever you do, day by day, with the same compassion. And that is what I call a cold compassion.

Lisa Skinner:

All the analogies you use, they're brilliant, and they're so spot on. They're just really, really easy to relate to. And I'm enjoying all of them. They're they're really brilliant. I want to cover a couple more things before we run out of time. This has been an exhilarating conversation and discussion, and I think it's going to benefit everybody who is in this situation, who's listening to us today as a mediator, because you spent quite a bit of time as a mediator. And what that meant is basically, in a nutshell, serving as a bridge of hope and consolation for families who are in crisis, right? Well, how has this perspective shaped the insights and support that you offer in your books? Yeah? Yeah,

Lisa Skinner:

Dr. Wolfgang Spangenberger: what shaped me there is one we spoke already about it okay, that I told, told you I spoke about that we always have to find our own solution. Yeah, so I'm not producing a recipe, yeah, or general advice which is applied to applyable to everybody? No, because every situation is different. So we should, we should acknowledge that, yes, that's that always to go on an individual area, original side, okay, okay. The other thing is, is maybe as a mediator, you're used to listen to both sides, and your goal is not a compromise. Okay? Your goal is a consent. So the difference between the compromise and the consent is the following, in a compromise, both are losing, but you can live with it. It's

Lisa Skinner:

an interesting way to to approach that.

Lisa Skinner:

Dr. Wolfgang Spangenberger: In a consent, both want to do something, and they they find a way to go in the same direction. Oh, I love that. Okay, so it's, it's a good question of attitude, of an inner attitude you have. Okay, so I will never say something is right, something is wrong. I go beyond that, okay, yeah, I'm saying, Oh, I like that. That is good for me in this moment, and that is good in me at that moment. So I nip in different cups, even scientifically, I love it. Yeah, I don't want to criticize one or the other method. They're all good in one or the other way, yeah, but maybe one thing is a little bit better here and a little bit better there. So I'm just putting the best things together, and I have no promise with that.

Lisa Skinner:

Well, will you share a story with us from your work as a mediator or your experiences with caregivers that encapsulates the kind of support and understanding you hope your readers take away from your new book, The unexpected marathon, your guide to long term caregiving.

Lisa Skinner:

Dr. Wolfgang Spangenberger: Yeah, one story I told you already. It's a story of my my father, yeah, so there, I encapsulated all that and used it, and it just told me, Okay, that seems to be a proper way. Yes, so to go in that direction, and let's say this way, because, like in the hospital, we have, we have had this approach to Alzheimer disease or dementia. We have had a lot of patients with dementia, yeah, so that was like an decision how to say, a decision by the patients, yeah, or their caregivers, yeah, to be honest, yeah, to say, Oh yeah, yeah, we are missing that. We are missing that in the normal field. So by Sure, we have had more dementia patient than usual or than a usual hospital.

Lisa Skinner:

And correct me if I'm wrong, Wolfgang your book is increase in the pre sale phase. Correct, correct. When does it actually come out? The

Lisa Skinner:

Dr. Wolfgang Spangenberger: book will come out in in January. Yeah, so it's in the editing process, but I don't want to let you wait with this interview, so I'm talking here already before it's, it's, it's available, but it will be published. This will be published in January, perfect,

Lisa Skinner:

so people can what go on to Amazon now and and pre purchase it. Or, how can they, yeah, reserve one. How can they reserve one?

Lisa Skinner:

Dr. Wolfgang Spangenberger: Okay, let's say that the first possibility is that I wrote a little booklet, yeah, just to give you a taste of the book. Yeah, so and this, this booklet is available already now. Yeah, is

Lisa Skinner:

this the down, free, downloadable excerpt exactly about the book, okay, and it's on your website?

Lisa Skinner:

Dr. Wolfgang Spangenberger: Yes, on my website. It's Wolfgang spangenberger.com so very easy. Or you can go to LTC marathon.com LTC from long term caregiving marathon.com

Lisa Skinner:

Okay, so what will readers find in this excerpt material, and would want them to read more when the book comes out. Yeah?

Lisa Skinner:

Dr. Wolfgang Spangenberger: I mean, yeah, like I said, I make you a little bit appetite for the book. So I'm touching, I'm touching some some chapters. Yeah, I'm not going in depth, but I'm just touching them, yes, so, so I'm, I'm speaking, I started already about colds and hot compress compassion. This is about what is self concordance, a very important issue. So that means that the long term care should resonate with your motives, your goals or your values, otherwise you have major problems. Yeah, so how to figure out that it's aligning with with us as a long term giver? Then I heard very often in my medical career that when a challenge comes up, people are fighting there. Challenge. Yeah, I'm fighting cancer, whatever. Okay, so I don't like that very much, and I give you an idea about what is the difference between fighting a challenge or master challenge. Because when we are fighting a challenge, we are on a reflex area, we are putting our boxing gloves on, and we have no fingertip feeling anymore. Yeah, there's no finesse anymore in it, okay, so I like much more to speak about mastering a challenge. So that is in the for example, in the booklet, yeah, and I speak a little bit what is stress and what is burnout, or burnout? We talked already about it. Yeah. And stress. Stress is when our coping systems are tested. Yeah, they're coming to their limits. Yeah. And stress is a situation when we think we have no influence anymore on the situation. And why is it so? That is a little topic of the booklet.

Lisa Skinner:

Great. Well, we are almost out of time. This is been just an amazing discussion based on everything I've heard you say and everything that I've learned about your book, I honestly have to say that this book falls into the category of a must read, and I encourage everybody to reserve a copy of it. And I think that this is going to be a tremendous resource for family members and caregivers of people who live with Alzheimer's and dementia. Everybody who's listening, we will include Dr spangen burgers, website, address and how to access the pre order book reservation form in our show notes. Just in case you did not catch the addresses, we'll include them in the show notes so you will have access to them before we say goodbye. Is there anything else that you would like our listeners to know or that you'd like to add to what we've already talked about today.

Lisa Skinner:

Dr. Wolfgang Spangenberger: I enjoyed it very much to talk to you. Thank you very much. Yes, and I think we could go on and on, yes, so and it's sometimes, it's always, unfortunately, that you have to stop at some point. Yeah, it's getting too long.

Lisa Skinner:

When it comes to Alzheimer's disease and dementia, there's so much to talk about, and you can't cover it in this shorter period of time. I mean, we've got an hour today, and I think we've only hit the tip of the iceberg. So maybe what we should do is, after your book comes out next year. Have you come back and we'll pick up this conversation again and expand on it more after people have had a chance to actually read it. We could do a college show and have people call in and ask questions after they've had an opportunity to read the book, because it really sounds like an extraordinary book for caregivers, like I said, it's going to be a must read, as far as I can tell. So thank you again for being here. It's been my privilege to have you on the truth lies and Alzheimer's show as my guest, and I would welcome you back in a heartbeat. This has been a delight and best and best and best of luck to you on the publishing and sale of your book, and best of luck to you in your future pursuits. Thanks again for being here. Dr spangenberger,

Lisa Skinner:

Dr. Wolfgang Spangenberger: thank you very much. Take care. You too. Have.

About the Podcast

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Truth, Lies & Alzheimer's

About your host

Profile picture for Lisa Skinner, CDP, CDT

Lisa Skinner, CDP, CDT

Author Lisa Skinner is a behavioral specialist with expertise in Alzheimer’s disease and related dementia. In her 30+year career working with family members and caregivers, Lisa has taught them how to successfully navigate the many challenges that accompany this heartbreaking disease. Lisa is both a Certified Dementia Practitioner and is also a certified dementia care trainer through the Alzheimer’s Association. She also holds a degree in Human Behavior.
Her latest book, “Truth, Lies & Alzheimer’s – Its Secret Faces” continues Skinner’s quest of working with dementia-related illnesses and teaching families and caregivers how to better understand the daunting challenges of brain disease. Her #1 Best-seller book “Not All Who Wander Need Be Lost,” was written at their urging. As someone who has had eight family members diagnosed with dementia, Lisa Skinner has found her calling in helping others through the struggle they can have a better-quality relationship with their loved ones through education and offering workshops on counter-intuitive solutions and tools to help people effectively manage the symptoms of brain disease. Lisa Skinner has appeared on many national and regional media broadcasts. Lisa helps explain behaviors caused by dementia, encourages those who feel burdened, and gives practical advice for how to respond.