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Introduction to Lisa Skinner with Matt Feret [1:09]

Matt Feret:

Hello everyone. This is Matt Feret, author of Prepare for Medicare and Prepare for Social Security Insider's, guidebooks, and online course training series. Welcome to another episode of The Matt Feret Show, where I interview insiders and experts to help light a path to successful living in midlife retirement and beyond. Lisa, welcome to the show.

Lisa Skinner:

Oh, hi Matt. Nice to be here. Thanks so much for having me on your show as your guest. I'm really happy to be here.

Matt Feret:

I'm happy you're here. So tell everybody what you do, how long you've been doing it, and how you help people.

Lisa Skinner:

Okay. I have a very unique profession. There's not a lot of us out there, but I am what's called a certified dementia practitioner. I am also a certified dementia care trainer and a behavioral specialist. So my area of expertise is I help families and caregivers navigate the heartbreaking and daunting challenges that they face when they have a loved one or are caring for somebody that is progressing through Alzheimer's disease or one of the other brain diseases that causes dementia. This is a very long process. The average person lives with it from eight to fifteen years. A lot of people, they live with it even after the onset of the symptoms for another twenty years. So it's a very long and challenging process for family members to deal with and try to maintain a quality relationship with their loved one. And it's so difficult to do because as they're progressing through the various stages of the disease and their brains are changing due to the ongoing damage being done to their brains, the family members and caregivers deal on a daily basis with very, very unexpected changes in their loved one.

And most people, I've been doing this for thirty years, you asked me that question, but my very first experience was about 50 years ago when my grandmother was diagnosed with, back then they called it senile dementia, which is synonymous with Alzheimer's disease. I was a teenager at the time. I remember going over to her house one day and she started telling me about these birds that lived in her mattress, and they came out at night and pecked at her face and that these men were constantly trying to break into her house and steal her jewelry and trying to kill her, and that these rats were invading her home. And I never heard anything like this out of my grandmother's mouth before, and my mother never said anything about her diagnosis because way back then you didn't talk about it. So my experience with this disease actually dates back close to fifty years, but I have been doing this professionally for thirty years.

And the number one commonality that I have noticed in family members and caregivers is their lack of understanding of really what happens on a minute by minute, day by day basis that is a result of the disease. Most people associate Alzheimer's disease or dementia with exclusively memory loss and confusion, and it is so much more complicated than that. And my grandmother is a very good example. She displayed the suspiciousness, the paranoia, the hallucinations, the delusions, all of these side effects, if you will, that are a direct cause of the damage being done to the brain. And I have learned in all the thousands of families that I have worked with and counseled that once they understand a little bit more about the depth of the disease and how it's changing the brain and what to look for and what to expect as their loved one progresses through the stages from early stage to middle stage to late stage, it is so helpful to them to be able to deal with this.

Because a lot of our instinctive reactions are actually counterintuitive to the way we teach people how to effectively respond to any given situation that comes up. And that's not natural to us. It's counterintuitive. And so, if let's say I went to visit my mother in a memory care unit and she didn't know who I was, my gut reactions response might be, “Oh mom, you know me. You know me, you remember, I'm Lisa.” That's what people instinctively want to say for a variety of reasons. Their feelings are hurt, that their mother doesn't recognize them, they want to fix them. We all want to fix people, and they want them to be back the way they knew them before their brains succumb to a brain disease. And that's not what we teach. So I work with people, and that's why I wrote the books I wrote, and I'm developing a training program because I have discovered that once people really have a better understanding of how their loved one is changing because of the illness and then effective responses, then they can really focus on what really matters.

And that's spending quality time with their loved one through this disease. It's a long course, as I mentioned, and not with the added stress and frustration of constantly arguing, constantly fighting, constantly not knowing how to respond to that just outlandish thing. They just said like, oh yeah, there's birds living in my mattress, and they come out at night and peck my face. I mean, that's a very farfetched, fetched thing to come out of your grandmother's mouth. But of course, I had no reason to doubt her. She had never lied to me in her life, and I could tell that she completely believed it. And I took her into her bedroom that day and I said, well, show me where these birds are living. So we went into her bedroom and I threw the covers off of her bed and I looked under the mattress and I said, “Grandma, help me here. I'm not seeing where these birds are coming in and out of your mattress or how they're getting in or where they're living.” And she very cleverly said to me, she says, “Oh, Lisa, you might not see them, but they are just very clever.” And I have realized, because I've worked with so many people who suffer from Alzheimer's disease, I actually have had eight of my own family members suffer from one of the brain diseases that causes dementia. My grandmother happened to be the first, but I've also worked with them. And one of the things that I noticed about this disease is they are able to come up with very clever responses to a lot of the things that they don't understand, that they don't want to admit that they don't understand your question or they don't understand what you're asking of them. And I thought it was really cute because my grandmother came up with a brilliant response to me saying, I just don't see it. And she says, oh, but they're very clever, and I thought that was a brilliant response. And they get really good at it, really good at it. So we have to figure those responses out too.

The Early Signs of Dementia with Lisa Skinner [10:06]

Matt Feret:

So at age 15, that sounds like a very scary thing for a 15-year-old to hear out of your grandma's mouth. And I suspect then looking back or maybe talking to your parents about it, that wasn't maybe the first sign. And you mentioned in the first couple moments of the show, early, middle, and late. So do you mind if I ask you questions in that type of three-pronged approach early? And we'll start with what are some of the first signs of any brain related dementia or Alzheimer's? Is it immediate one day somebody says something, there are birds in my mattress, or are there things that lead up to that we must be attuned to?

Lisa Skinner:

So that is a really important question, and a lot of people don't, they come to me with that exact question because if they all of a sudden forget a name in the middle of a conversation, a lot of people think, oh no, am I starting to develop Alzheimer's disease? So let me address that. That makes this disease one of the most difficult diseases to diagnose in several different ways. Number one, it's very difficult to differentiate between the normal aging forgetfulness that we all go through as we get older in life to the next level up, which is called mild cognitive impairment. Now, some people who kind of progress into mild cognitive impairment, they stay there, but others continue to progress. And mild cognitive impairment ultimately turns into dementia caused by one of over a hundred brain diseases that cause dementia. Alzheimer's happens to be the one that we hear the most about. It is the most common form of dementia. So because of that, most people are not diagnosed with Alzheimer's disease until they're well into their mid stage.

Matt Feret:

Oh, okay.

Lisa Skinner:

Because the signs and symptomology is so hard to detect in the beginning stages and because there's no known test to diagnose Alzheimer's right now.

Matt Feret:

Yeah, I've read that and I've also read, you get all the stuff online, they're like regular age related memory loss is what did I come into this room for? And then an advanced one is, I found my car keys in my fridge. I mean, those seem really kind of, I don't know, too easy to recognize that stuff. And to your point, well let's first start, forget about doctors for a second. So if I'm a caregiver, even in informal or a formal one, or it's just my parents or my grandparents, are there examples like that that are telltale signs or is because they're, as you said, over a hundred brain diseases that lead to dementia? Is there really no easy checklist, someone like me could even begin to think about or even begin to notice?

Lisa Skinner:

There are subtle signs, there are more than subtle signs. So I'll kind of address that for you. It's funny that you use the example, what did I walk into that room for? Because I did that last week. I walked into my kitchen, I stood there with the D-cap on and asking myself, alright, I know I came in here for something, but I cannot for the life of me remember what it was.

Matt Feret:

Well, I've done that before and I've just made myself a sandwich, so I adjusted.

Lisa Skinner:

Yeah. So I turned around and I walked out. I got a few steps out and then I go, oh yeah, now I remember. I mean, I think this happens to all of us forgetting that our sunglasses are on top of our head.

Matt Feret:

Just had that happen to a friend of mine. I said, what are you looking for? And he said, my glasses. And I said, they're on your head. And he went, oh yeah.

Lisa Skinner:

I think we've all been there, done that. Okay. These are very normal signs of aging forgetfulness. But also if we're younger, there's signs of us being distracted by other things or our lives are busy, our phones are blowing up and we just forget. We're not paying attention. So that happens to everybody, not to worry. That does not mean you are starting a brain disease that'll cause dementia. So you've got that normal aging forgetfulness that you read about, and that's pretty common. But I think when the need arises to really start worrying or being concerned that these are not just common normal aging situations that we all experience from time to time that maybe there's something really wrong with us, there are more blatant memory issues that do arise in kind of the late early stage or early middle stage that would necessitate really going to the doctor and finding out if there's something more serious going on.

And let me address a couple of those. So, what we tell people, if you start to notice that your memory is declining to the point where it's interfering with your activities of daily living, and I'll give you a couple examples. You're having trouble balancing your checkbook and you never did before. You walk into your kitchen and that coffee maker that's been sitting on your counter for decades that you turn on every single day and have been for years, all of a sudden you can't remember how to operate it. And that continues to happen for a while. And to answer your other question, no dementia does not show up overnight. It's a process that takes a long time to get to this point that we're talking about right now where it's starting to interfere with your activities of daily living and function as a normal human being.

And some people live with the early stages for ten years and they live fine by themselves and they go about their business and they're still driving, and then all of a sudden these things show up and start to happen. It's like, I can't remember how to make myself a cup of coffee and I've been doing it for years. Your example of leaving the car keys in the refrigerator or the freezer, one of the good examples that I like to use is one of the differences between normal aging or even mild cognitive impairment and a really serious sign of a brain disease starting to develop or has been developing is you take those car keys out of your freezer and you can't for the life of yourself, for you remember what those keys are for. You don't know, you can't remember, you're so confused. You're looking at these keys going, okay, I don't think they belong in the freezer, but for the life of me, I can't remember what their use is and what I'm supposed to do with these. That is a clear sign of something more serious going on that you don't recognize the function of things anymore.

Typical Responses to a Dementia Diagnosis with Lisa Skinner [18:40]

Matt Feret:

So can I just say that that sounds horrifying. If I do that, am I going to know? Or am I going to talk myself out of it? What do most people do? Because I got to think, I have no idea, but all I can do is just make it personal and about me, which is if I find myself doing this and it's shocking to me that I'm, let's just use the example, the keys are in the freezer, I've found them and I don't know that they go to my car or my house. Do I know at that point that that's bad and that's not good? Or am I progressed enough to be like it scares the you-know-what out of me to think that at some point in my life I might, I know it's probably not the right phrase or the incorrect phrase, but I might be losing my mind. I don't want to know if I'm losing my mind. I just want to lose it or not lose it. And I think it just scares the, whatever word you want to throw in there, out of me that I'm going to realize it or will I talk myself out of it or rationalize it? Am I off here?

Lisa Skinner:

No, not at all. And I think most of us feel the same way. I think developing Alzheimer's disease is one of the biggest fears that we all have because it's such a dreadful disease. You completely lose yourself. But there is a statistic out there, so I'll just cite the statistic because it's factual. About 50% of the people who develop Alzheimer's disease or a brain disease that causes dementia are aware of it. And about 50% of the people have no clue that there's anything wrong with them. So obviously my grandmother didn't have a clue that anything was wrong with her, but I've known so many people who are in the various stages of the illness and they know that their brains don't work and they tell you, my brain used to work, but it's not working the same way anymore, so you just going to have to bear with me. And they verbally tell you that as long as they can still verbally tell you that, and a lot of them, they can't articulate their feelings anymore after a certain point.

Matt Feret:

That's got to be, yeah, I don't know. I'd almost rather, I mean, these are horrible things to say or even think about, but I'd almost rather just have cancer. So I know I've got it and I know that maybe I'll get treatment and maybe not, and maybe this is it, but to know that I'm, it's just scary. What if you're the 50% of the people who are recognizing this thing? Do you live with it? Do you immediately let people know? Do you immediately go to your doctor or do you just wish it goes away or stays the same? What do you do if you're in a space where, oh my God, maybe I do have an issue. What should you do?

Lisa Skinner:

I’ve seen all types of responses to it. I've seen people who kind of ignore it because they don't want to have to admit that there really might be something going on with them cognitively. I've seen people rush to their doctor at the slightest instance of forgetfulness, like me forgetting why I walked into my kitchen a week ago.

Matt Feret:

Yeah, that would be me by the way.

Lisa Skinner:

Because I know that it's common, and I don't feel that, even though I've had eight family members, five of those were actually blood relatives and the disease does tend to run in families. I didn't panic and say, oh, it's starting. It's starting because I know that's a common aging part of our aging process, and it just was a one-off thing, and I was probably thinking about a thousand other things. So I wasn't concerned about it. But other people freak out about a one-off thing like that, and I don't blame them.

Matt Feret:

Yeah, that'd be me. I'd freak out. I'd immediately run to a doctor and say, please test me for something you can't test for.

Lisa Skinner:

I do have seen a lot of elderly people who know they're aware that something is not right, that something's changing, but they try to hide it from their adult children because, so you got all kinds of cases, but a lot of times it reaches a point and it's usually right there starting in the middle of the disease where it becomes so blatantly obvious that you're not going to hide it from anybody. One of the common symptoms that happens in the middle stage is people start repeating themselves, and that's a pretty sure sign that there's something starting or has been going on for a while. They repeat in the same conversation, the same question to you over and over and over, and they don't let go of it. So, they might ask you twenty-seven times the exact same question that they just asked you two seconds ago, and it's very frustrating for caregivers and family members, but they honestly are not trying to annoy you. They honestly don't remember that they just asked that question or they repeat the same story in that same conversation over and over and over. It's like, “Mom, you just told me that story, you don’t remember?”

Matt Feret:

Is that different when if somebody tells you a story day one and then day three they'll tell you the same story? Is that the same thing?

Lisa Skinner:

No, it's when they repeat the same question or the same story over and over within that same conversation and it's like a broken record, then they might do it again three days later. But that's a really telltale sign that there's probably something going on there because it's very common for people with dementia to do that.

Matt Feret:

And so the 50% that don't know it, obviously their family members or their friends or their caregivers, what have you, will know it how important, just think they suspect it.

Lisa Skinner:

They probably by then will suspect it.

How to Address the Early Signs of Dementia with Lisa Skinner [25:13]

Matt Feret:

So what if I'm in that category where I don't know it, but everybody else around me is starting to see something either I think you said late, early or early middle. What do I do?

Lisa Skinner:

That's probably the time that you want to go to your primary care physician and I discuss the symptoms that you're seeing, the signs that you're seeing. And your loved one may sit there and say, I don't know what my daughter's talking about. She must be talking about somebody else because that's not me. I mean, the 50% that aren't aware of it, it's not necessarily because they're in denial, it's just because they don't know. And the other 50% would say, yeah, I'm starting to get really worried about because what my daughter's telling you is the truth, and it's happening more and more and more and on a regular basis, and I can't make a grocery list for myself anymore. I can't remember how to write the words and then when I get to the store, I don't know where to go to get the items. These are all common things that happen to people. So again, 50% of them are going to be aware of it and agree and say, yeah, what she's saying is truth. And then we believe it's time to see if there's something serious going on with me. And then the other half are, I don’t know what she's talking about. That's not me she's describing.

Matt Feret:

I've got to imagine for that 50% that says that I don't know what she's talking about, that there's got to be some, I mean, that's going to cause tension in a relationship. I mean, my daughter's trying to ship me off, get me out of here. I'm angry at her. I'm not doing this bad. There's got to be, and then that makes probably the person who's observing it probably reticent to actually say something maybe for a little while because they don't want to make dad or mom upset even though they're seeing these things. How have you worked with people to kind of handle that at family dynamic of, I'm not accusing you of anything. What I'm trying to do is tell you what I'm observing, but the recipient, right, the person who may not know what's going on or may not see what you see, isn't about ready to hear this and they don't want to acknowledge it. How do you counsel people to handle those situations?

Lisa Skinner:

I work with them on how to effectively respond to those type of reactions without causing what we call, in our realm, in our arena, a catastrophic reaction. And that's what happens when somebody is reacting to something they hear or that a loved one or a caregiver might say to them that because of the damage being done to their brain, to us it might be more of a little deal, but to them it's like a huge deal. And then they have a meltdown that's called a catastrophic reaction. I teach people how to effectively respond to the various things that come up on a day-to-day basis that will minimize that situation from escalating into catastrophic reaction. And it's all in what you say to them, the tone of your voice, your body language, and what I teach doesn't necessarily work every single time. So what I do is I provide people with a toolbox and they assemble their toolboxes, and if this response isn't effective this time, but it worked for you last time, then you have more tools to pull out of your tool belt to see what else might remedy that situation at that time.

Because you don't, I mean, we're dealing with human beings and we're dealing with human beings who have damaged brains, and you don't know if what you tried last time this happened is going to effectively work this time because it's a human being we're addressing.

Matt Feret:

It’s not a math problem. It doesn't have an answer that's pre-determined.

Lisa Skinner:

That's exactly right. So the more tools you have in your tool belt to pull from, then it makes your situation easier because, okay, this didn't work, but let me try this strategy until you find something that does work. Or if you don't find anything that does work out of your toolbox, then there are other options that you can try taking them into a different room and kind of distracting them or redirecting them. But you have to know all these things. It takes very specialized training to not only care for somebody with brain disease but have a relationship. And that's where the families are just as impacted by this disease as their loved ones because these are the examples of the things they deal with on a day-to-day basis, and they feel anger and frustration and their hope, they feel hopeless. It's like I just wanted to visit with my mother and it's turned into this big thing and I don't know what to do type of, and that happens on a daily basis.

And people aren't aware that these things, one of the biggest complaints that I hear from family members is after they do get their diagnosis, they get no guidance or direction of what they're supposed to do next, what they can expect or resources where they can go out and learn what they need to learn. Because really what it comes down to is yes, they want to spend quality time with their family member that is suffering from Alzheimer's disease, but the biggest reason why people don't go visit their demented loved ones in their memory care or the facility or their home is because it's so uncomfortable and so awkward. And you get into these tiffs on a regular basis because you don't know how to effectively respond or react to any given situation that comes up and they come up. I mean, I didn't go over to my grandmother's house expecting her to tell me to sit in the living room and tell me, oh, Lisa, did you know that I have birds living in my mattress that come out at night and pick at my head.

Matt Feret:

No, that had to scar you for the rest of your life and scare you at the time.

Lisa Skinner:

I've had people tell me that when they were about that age or even younger, their parents would take them to visit their grandparents. One of them probably had dementia, maybe they were living at home or they were in an institutional facility and they were so freaked out over the behaviors and the things that came out of their mouths like I experienced with my grandmother. They just never really moved past it. It just freaked them out. I can understand that because I've been through it myself. But there are ways I want to give hope to your listeners that it doesn't have to be this way. It does not mean that an Alzheimer's diagnosis means the end of your life the next day. There are a lot of ways to provide high quality life to people who suffer from it, but it's up to us as the loved ones and the caregivers to know how to provide the high quality life.

They can have a very meaningful and fulfilling life living with this disease for years and years and years to come. But it's up to us and unfortunately the burden is put on us or if they're in a care home to make sure that the people caring for them are up to date on the strategies and the theories and the ideologies and the techniques that are effective and positive versus negative and create catastrophic situations. And this is still, I've been kind of involved in this now for fifty years from my grandmother and then doing this professionally, and I'm only starting to notice a turnaround in it just in the last few years since COVID.

Diagnosing Dementia and Alzheimer’s with Lisa Skinner [34:17]

Matt Feret:

Well, I was going to touch on the system, if you will. I know that sounds conspiratorial, I don't mean for it to be, but let's take it back to that early stage, mid stage, and they go see the doctor and the doctor can run tests. Are the tests written tests? Blood tests? Are they accurate? What if I'm seeing what I'm seeing and the doctor's going, yep, nothing's there. How do I begin to handle my healthcare providers on behalf of my parent or my loved one or my grandparent?

Lisa Skinner:

Well, that's why this disease is so difficult because first of all, most people are not diagnosed. And when I say diagnosed, I use that very loosely, and I'll tell you why in a second. They're not diagnosed until the symptomology becomes blatant and it's occurring daily. And it's like, oh my gosh, there is something definitely wrong with mom. Where before it was subtle things and it's like, oh, maybe not, maybe so, but let's wait and see. And as it starts progressing, and it does become very noticeable by then you're in your mid stage and that's when you go to the doctor. So when I say diagnosis, and I use that very loosely, there is no definitive diagnosis today. The only way to definitively diagnose Alzheimer's disease today is to slice the brain and find the disease in the brain after the person passes away during an autopsy. Now, with that said, there are tests, but what those tests do is basically eliminate what it's not. And then if they determine that everything that they've tested you for does not turn up being something else, then this is probably Alzheimer's disease that we're looking at.

Matt Feret:

It's a process of elimination tests. It's not exactly a diagnostic test.

Lisa Skinner:

And I want to give you a really good example of a very famous person that most of us have heard about, especially our age group. I mean, I'm probably a lot older than you, but do you remember Chris Christofferson?

Matt Feret:

Of course I do.

Lisa Skinner:

Okay. Well, he was one of my favorite artists when I was a kid, a teenager. So Chris Christofferson was showing all of the symptoms that we see with Alzheimer's disease, and he was actually diagnosed with it and treated for it for three years. They went through the battery of tests and came down to the conclusion, it's not this, he's got Alzheimer's disease. And he was treated for it for three solid years. Turns out it was a misdiagnosis. Somebody, either they had a friend who was a doctor or the doctor thought of the idea. But long story short, somebody had the brilliant idea to test the man for Lyme disease, and it was positive. So he did not have Alzheimer's disease. He was suffering from Lyme disease. And a lot of the symptoms of Lyme disease, once it gets into the brain mimics dementia. They took him off, although the treatment plan that he had been on for three years for Alzheimer's disease and treated him for Lyme disease. So that's what I'm saying. It's that process of elimination, but it's not absolute. And the other thing, I'm going to throw another wrench into this scenario. People very commonly suffer from what we call mixed dementia. And that means that you are actually suffering from not one brain disease, but two or more brain diseases simultaneously.

So try to figure that out.

Matt Feret:

Yeah, I just closed my eyes. Yeah, I know. If you're listening to this, you can't see it. And my brain's trying to process that.

Lisa Skinner:

Yeah.

Matt Feret:

So you can, yeah, you did say there are over a hundred. Why couldn't it be more than one? Of course.

Lisa Skinner:

And a lot of people just have no clue that that's even a possibility, let alone that that's happening to your loved one. That your loved one is suffering from Alzheimer's disease and maybe Parkinson's disease and maybe vascular dementia all at the same time. And it's not as uncommon as we might think. It happens to a lot of people. So then you got a double, triple whammy there that you're dealing with because each one of those diseases damages a different part of the brain, and the symptoms are very similar, but there are differences in the symptoms in the way it damages the brain.

Matt Feret:

And if you have three, one of them could be a misdiagnosis to throw that confusion back in.

Lisa Skinner:

Well, I think a diagnosis of Parkinson's disease is actually a lot more accurate. You can diagnose that like Michael J. Fox, but Alzheimer's disease is process of elimination and don't, sometimes it's not the right diagnosis, just like we saw with Chris Christofferson.

Matt Feret:

Okay, so when you say stuff like that, I totally get it, but then it makes my brain explode because it's, well, now how do I trust my healthcare practitioners? Or do I have to go to two or three or four or five or are all of them going to have the same tools available to them? Is there a specialist? Is there a specialty hospital or do I have to call you and figure out how to self-diagnose this myself? Do I have to play my own doctor? I mean, it's really, I don't know. It's overwhelming what you just said. It was like, how do I know? Yeah, it's overwhelming.

Lisa Skinner:

It is overwhelming. And I think that's kind of the realization I've come to throughout my career is I don't think people have any idea how overwhelming this disease can be because it's not just about memory loss and confusion. It's not just trying to set your loved one straight about the fact that they don't remember your name or that you're even their daughter. It's all these things we've been talking about today, and it is overwhelming. There's so many different things that you need to know about. And to answer your question, unfortunately, there is no cure for this disease. There are medications when it's first diagnosed that the doctors do sometimes put their patients on that can slow the progression of the disease because it is a degenerative and progressive disease, it does get worse, and it is terminal. There is no cure, there's no reversal of it.

But there are medications that doctors do put their patients on that does work for somebody, doesn't work for everybody. That does slow the progression, but it only works for so long and it works on each individual differently. So some people can be on it for years and you don't really see any further decline in their disease. Some people can't tolerate the medication so they can't be on it. And other people, it might work for a very short period of time. Then all of a sudden it just stops working, it reaches its plateau and it's not effective anymore. So you're taken off and then you just have to go with the natural progression of the disease. And that's different for everybody. So because there's no cure and there's no real treatment, I think when you, at the end of the day, with the exception of somebody like Chris Christofferson who had a misdiagnosis of Alzheimer's disease and then he actually had something that was treatable, Lyme disease is treatable and he spent three years being treated for something that he didn't even have.

You kind of just go with the flow and you follow the symptoms that the person is displaying to. Really, that's really what's going to matter, is that you are doing everything you can to provide a meaningful and a high quality of life and a useful life, a purposeful life. And maybe at the end of the day, it doesn't really matter what brain disease it is because there's no cure for any of them. Lyme disease is not a brain disease. It's a disease that we get from being bitten by a tick, but these are brain diseases that we're talking about and there's no cure. So we want to create the best life in the best world possible. And in order to do that, we need to learn how to recognize the behaviors, the signs, and also very importantly know to how to effectively respond to them. That's key to it.

Where to Begin After a Dementia or Alzheimer’s Diagnosis with Lisa Skinner [44:45]

Matt Feret:

Alright, so we will go, I want to go there. Where do I start? What if I suspect, what if I already know? What if I'm already halfway into this and I'm dealing with a big sense of overwhelm? Should I start with your book? Should I start typing stuff into a search engine and hoping and praying something relevant comes up? Do I call the Alzheimer's Association? Do I have a local support group? Where do I start? What steps do I take in order I want to provide the best life I can for my loved one? So how do I take care of them first? Where do I start with this thing?

Lisa Skinner:

My genuine answer to that question is all of the above. I think I purposely designed the book to give people at least enough of an understanding about what the disease is doing to their brain, so they at least have more of an understanding than they had before reading the book. The Alzheimer's Association is an excellent resource. They have an 800 number that is available to people twenty-four-seven. You can call it and ask the person that answers the phone. They may be nurses, but if they're not nurses, they're trained in Alzheimer's disease, dementia and they're there to help you and to help with your overwhelm and guide you. If you're in a situation that you just absolutely feel is getting out of control and you don't know how to handle it, that's a resource for you. So know what resources are available to you.

Support groups are wonderful. I led support groups for years and I think this is really important for your listeners to know, because when I first started leading support group, I really believed it was all about helping the caregiver who was there or the loved one who was there understand what was happening to their loved ones. So they would know all these things that we've been talking about today. But what I didn't understand, which I do now from leading support groups, is they are desperate for acknowledgement and recognition of what they're experiencing too. That their lives have been shattered, their lives have been turned upside down. This is probably one of the hardest diseases that can strike any family for a variety of reasons that it lasts a really long time. I mean, even if you're an average eight-to-fifteen-year person, that's eight years of dealing with this disease on a day by day basis.

Like I said, my grandmother had hers for twenty years. And if you want to maintain a relationship, a healthy relationship with that person, when all of these behavioral issues come up and personality changes and they start screaming at you and accusing you of this, that, and the other that you didn't do, like you just stole all their money, drained all their money out of their bank account, you didn't do that, but they believe you did. And once they get an idea in their head and they believe that something is true, good luck trying to convince them that it's not. So there are very strategic ways to handle every single one of these situations, and that's what I teach people. That's what I teach these families.

Matt Feret:

It's a really good point. So you have to not only learn everything you can and use all the support groups when you're helping a loved one or a family member or a friend if you're in that position, but also you got to take care of you. That's a caregiver message that doesn't come across enough of you got to figure out how, I mean it's going to impact your family, it's going to impact if you have kids, even if they're adults, if you got grandkids, it scared you at age 15, you still remember it today. You have to walk people through these things. And the same advice applies then, which is not only do you have to have, if you're taking care of somebody resources and go get help and go learn and go be part of support groups and call the Alzheimer's Association, but you got to get involved in caregiving groups too. I would imagine the support there you need from all those angles probably sounds like you're saying it's equally as important both or important.

Lisa Skinner:

Absolutely. It is equally important. And then another thing that commonly happens, you talked earlier in the beginning of our conversation about family dynamics. You have no idea the family dynamics that family members form camps and one feels this way, one camp feels this way and the other one feels that way and they're constantly fighting with each other and disagreeing. Or one of the other common things I hear from adult children, and it's not exclusive, but the person that is typically tasked with the sole responsibility of care and making decisions are the eldest daughters. And I hear from a lot of them that my brother, my sister, they do nothing to help me out and then they eventually just suffer from complete and utter burnout. I had no idea what I was getting myself into. I stop the world, I want to get off. And if you don't take care of yourself, you're not going to do your loved one any justice because you have really created a nightmare, didn't feel like you've been thrown into a nightmare or the eye of a storm that you can't figure out a way to get out of. A lot of caregivers are suicidal because the stress of caregiving for somebody with this disease is so overwhelming to them and just, I can't do this anymore because it is year after year after year and they feel like they have no friends left. Their friends have abandoned them, their brothers and sisters have abandoned them, that it's all up to them and nobody understands what they're dealing with, but they feel that obligation. This is my mother we're talking about. So a lot of family dynamics that go on as well.

Matt Feret:

Say you are that eldest daughter, or you're just the one giving care and you've got siblings. Any advice of getting out in front of that early on or do you ask and then stop asking? Do you bury it and let it all come out at once? What's, what's the counselor approach I guess to this? If you've got siblings and you are the one or on the other foot, your other sibling's, the one taken care of, what can you do to support your sibling?

Lisa Skinner:

Well, I would advise that the family discusses the situation proactively versus reactively. So have this conversation when your parents are starting to age and say, okay guys, if mom, if dad, if grandma, if grandpa, let's have a plan. Who is going to be the caregiver? Who's going to help with the caregivers? Where are they geographically located? Maybe one's in Alaska and you're in New York. And that's going to be a very difficult obligation to fill. But I would say that probably to start with having a conversation with your family members if this happened to your family, have a plan, and let's say it comes down to one person is pretty much elected to have the sole responsibility of being decision maker and decision maker and have to deal with everything that comes along with it, all the legalities. If it doesn't work and they can't do it on their own, then have a plan to have help.

Whether it brings somebody in several times a week, it's very expensive and it's private pay unless you just happen to have a long-term care insurance policy already in place when the symptoms show up. If you don't, then you don't qualify for long-term care to help supplement the cost and the cost for full-time cares prohibitively expensive, $12,000-$15,000 a month. How many families can afford that? And that's why a lot of families try to do it themselves. So I would say have a plan long before you reach the point where now you're reacting to the realization that mom has Alzheimer's disease and oh my gosh, now what do we do? And nobody wants to or is able to help out. And then you start building up all that resentment. Plus you're dealing with the physical challenges and emotional and mental challenges of it. So I would start there. And then the other thing that I would advise if you do suspect that your loved one or the person that you've been asked to care for are showing signs of the disease, but maybe they're just still kind of subtle, learn all you can about it because then you'll be prepared. And being prepared will make your life so much easier than figuring it out when you're in the middle of or trying to figure out when you're in the middle of a crisis.

Navigating Late Stage Dementia with Lisa Skinner [55:36]

Matt Feret:

Let's go late stage and what does that look like? When do I know whether or not it's time for mom or dad to go into a memory unit or when do I know it's time for my spouse for full-time care? What does that look like?

Lisa Skinner:

So late stage Alzheimer's disease, or for that matter, pretty much all brain diseases that cause dementia are the hardest stage. And that's basically the point of the disease where the person needs 24-hour, 7-days a week care and they can't do anything for themselves. All activities of daily living are provided for them. They need to be dressed, they need to be bathed, they need to be fed. They typically can no longer communicate with you. They can't articulate their wants or their needs to you because they've lost their communication skills. So, they are 100% dependent on a caregiver. And it's a difficult position for everybody to be in, and you'll reach a certain point where you might want to start arranging for hospice to come in. Now, if your loved one is in an assisted living, they probably have been moved in, but at that point moved into memory care.

But they can stay for the duration of their life in that memory care unit because they allow hospice to come in. Most of them have what's called a hospice waiver, and hospice can come in and they will help with the care or take over the care along with the staff in the facility as long as the family, the power of attorney or the medical power POA is okay with palliative care. So comfort care versus being hooked up to any apparatus that's going to prolong their life. If they choose that they're going to have to go to a nursing home, which is a medical facility or a hospital because an assisted living facility and a memory care facility are actually social models. They're not medical models. So, they cannot care for anybody whose family members insist that they're resuscitated. So, as long as they just want them to stay there for the rest of their days as comfortable as hospice can, hospice nurses can make them and oversee that they're not in pain and just let them run their course, then that's an option for people.

So you want probably to start having conversations with a hospice organization earlier, better than later. Don't wait till the last minute. You want to have a relationship with a hospice organization. So when that time comes and you make the decision to get hospice involved in the care of your loved one, you trust them. You feel confident in their abilities. You feel like you have placed your loved one in good hands, and a lot of people wait till the last minute, and I hear about nightmare experiences that they encounter and they didn't do their research or their homework before it was time to call hospice. They said, I need you. My parent is slipping away and they aren't happy with the care that they're receiving.

How to Proactively Manage and Plan for Dementia [59:38]

Matt Feret:

I have many more questions I could ask, but I want to ask one more, and again, maybe it's just my own personal question that I want to know, which is I guess fine because hopefully other people share it too. How do I not do this to my kids? I don't know that I'm going to have dementia or Alzheimer's, but I don't want them to worry. I don't want to negatively impact their lives. What can I do if I've either got into my family or I just want to get rid of any type of financial or mental or emotional stress that I may cause them and not mean to, nobody wants to do this to their kids or their caregivers, and how do I get in front of this?

Lisa Skinner:

It's actually easier done, and it's just about planning and having these conversations when you're still healthy and find out what the wishes of your parents or your grandparents are, and then divide a plan to be able to execute their wishes when they can no longer express them to you. But you've already had enough of these conversations that you all have agreed how it's going to be handled within the family before you get to the point where you just, how are we going to pay for this? What kind of environment should we plan on having you be in? Since COVID, especially, a lot of families are taking in their loved ones because the death rate in the institutionalized facilities was so high during COVID for people living there that it has scared a lot of people away from them. So you're seeing a pivot of care approaches now and family members are bringing them into live with them or they're hiring outside help to go in and be caregivers at their homes.

But to answer your question, I think the most direct approach and the best approach is to start having these conversations before you get to that point, because I'm going to tell you this, this is the elephant in the room. It is there. It's in your face, and it is not going away. So to stick your head in the sand or pretend that it doesn't exist or ignore it is you're doing yourself a disservice, because the Alzheimer's Association and the World Health Organization are projecting, and these are true numbers, that by the year 2050 the number of people, and this is not only in the United States but worldwide, the number of people that will develop Alzheimer's disease, and that's just Alzheimer's disease. This is not to mention the other brain diseases. It's going to triple by the year 2050. And I can tell you as we sit here talking right now as a society, we are not prepared, and that's 22 years away.

It's going to be here before we know it. So one of my goals is to raise the awareness so people maybe can start having these kind of conversations with their families and devise a plan. Or if they suspect that maybe their loved one is developing Alzheimer's or one of the brain diseases, they do start learning more about it. They start learning what resources are available to them. They are figuring out how they're going to pay for it. These are all things that obviously are going to be much better for the family as a whole if they have the plan in place and don't wait and be reactive to all of a sudden finding out that their mom has Alzheimer's disease and oh my gosh, what do we do? We don't even know where to start.

Concluding Thoughts and Out by Matt Feret [1:04:19]

Matt Feret:

Right. It's been a great hour and I could go longer, but I want to be respectful of your time and maybe we'll have you back on again.

Lisa Skinner:

There's a lot to talk about.

Matt Feret:

I was just going to say, I know we just scratched the surface in an hour. So what big question did I not ask about this topic that I should have?

Lisa Skinner:

I really think that we did cover the biggest concern that I have as a certified dementia practitioner and my experience working with as many families as I have and being in the weeds, working with the people, living with the disease, and setting up dementia care, memory care wings. I feel like I've seen so much of what people go through, not only the caregivers, the family members, and the people who suffer from the disease. And I'd say that we did cover my biggest message, is understanding what this disease will be doing to your loved one and do everything you can to be prepared for all of the unexpected things that I guarantee will show up on a minute by minute, day by day basis. Because the more you're prepared, the easier your experience going through this disease with the person you're caring for or with your loved one is going to be so much easier than not being prepared. Being prepared is really what the key is to this, and that's through education and knowing where your resources are, how to contact them, and not being on your computer Googling these things when you're in the middle of a crisis.

Matt Feret:

Yeah, that doesn’t help anybody. I will put all the links on the website under the show notes as well. Also within wherever you're listening to this, I'll put them in the actual description. So, we'll put that all those there.

Lisa Skinner:

Did you stop recording?

Matt Feret:

No, I haven't stopped recording yet. Do you want me to stop recording?

Lisa Skinner:

No, I was just going to ask.

Matt Feret:

I'm going to leave this in here, though. That's the funny part. No, I haven't stopped recording because I didn't say thank you. And so, I'll say thank you, Lisa, so much for being on the show and bringing this to light, and we will, like I said, we'll put everything up, all the links to you and how to find you and more about this topic and what you can offer everywhere The Matt Feret Show is. So Lisa, thank you very much for being on the show.

Lisa Skinner:

Thank you so much for having me and supporting my message to the world about raising their awareness about this very difficult disease. So thanks again, Matt. It was a pleasure to be here, and it was a pleasure to talk to you. You're great host.

Matt Feret:

Hey, thanks. Well, it was nice. Thanks for the compliment and very happy to do it. It was a pleasure having you on. Thanks, Lisa.

Matt Feret:

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