Coping with a Loved One’s Dementia with Lisa Skinner

On this episode of Live. Love. Engage. we’re joined by Lisa Skinner to talk about how people are affected when their loved ones get dementia. Lisa is a behavior specialist on Alzheimer’s and its related dementias. She’s also a private advisor who helps families, caregivers, and health professionals gain a deeper understanding of this brain disease.

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On this episode of the Live. Love. Engage. podcast:

• Signs and symptoms of Alzheimer’s disease.
• Other common similar brain diseases.
• What happened to Lisa’s grandmother that stuck with her.
• Lisa’s professional and personal experience with dementia.
• How Lisa helps families cope with suffering family members.
• The most common time to be diagnosed with Alzheimer’s.
• The difference between Alzheimer’s and normal aging.
• The tools and techniques that can be found in Lisa’s book.
• Why you have to be delicate when correcting false beliefs.
• What happens to short term memory as Alzheimer’s progresses.
• Why your loved one with a brain disease might not recognize you.
• How alcohol consumption influences dementia.
• What opened up Lisa’s eyes to the devastation of loved ones.
• Why Lisa highly recommends support groups for those emotionally impacted.
• What you can learn in Lisa’s book.
• Where to find more resources on Alzheimer’s if needed.

Connect with Lisa

Not All Who Wander Need Be Lost Facebook page: https://www.facebook.com/notallwhowanderneedbelost

More resources

Alzheimer’s Association: https://www.alz.org/

TRANSCRIPT

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TRANSCRIPT

You are listening to the Live Love Engage podcast.

On today’s show, we’re going to be talking about how to manage the day to day challenges that people face with a loved one who is afflicted with dementia.

Stay tuned. I am Gloria Grace Rand, founder of the Love Method and author of the number one Amazon best seller, Live Love Engage How to Stop Doubting Yourself and Start Being Yourself. In this podcast, we share practical advice from a spiritual perspective on how to live fully, love deeply and engage authentically so you can create a life and business with more impact, influence and income. Welcome to live, love, engage.

Namaste and welcome back to Live Love Engage. Of course, that is I’m assuming that you’ve been listening or watching before, so that’s what I’m saying. Welcome back. And if you haven’t, catch him on the replay. But anyway, I am your host, Gloria Grace Rand, and I am delighted to have a wonderful woman on the show today who is going to educate us about the brain and things that happen to it. So she will I’ll get more into that in a minute. But first, I want to welcome Lisa Skinner to Live, Love Engage.

Hi, Gloria. Grace, thank you so much for having me as a guest on your show. It’s a pleasure to be here.

Well, I appreciate having you. And let me share with our listeners and viewers on YouTube just what your expertise is. And it’s something that affects a lot of people, unfortunately. So Lisa is a behavior expert in Alzheimer’s disease and other related dementia, and she has a lot of experience in this field. She’s been a community counselor, regional director of senior care facilities, a trainer, speaker and private advisor, helping thousands of families and caregivers understand the daunting challenges of brain disease for over 25 years. She’s also the author of a book called Truth, Lies and Alzheimer’s Its Secret Face and and really spends a lot of time helping people by offering counterintuitive solutions and tools so that they can manage symptoms of brain disease. And so I want to again welcome you and thought we’d start off, first of all, with having you explain the difference between Alzheimer’s disease and dementia. Because I know a lot of times I think people use those terms interchangeably and I don’t think they should be doing that, should they? So maybe you can enlighten us on that.

Well, that’s absolutely correct. And there actually is a significant difference between the two. I’ll start with Alzheimer’s disease. Alzheimer’s disease is actually a brain disease that attacks the brain and damages the cells. There are over 100 known brain diseases that cause very similar behaviors and symptoms as Alzheimer’s disease. The hallmark for Alzheimer’s disease is memory, loss and confusion. That’s what most people associate the disease with. But it’s actually very much more complicated than that. Some of the more familiar brain diseases that have a lot of overlapping similarities or Parkinson’s disease, people can get that with dementia or without dementia. There’s Huntington’s disease, there’s vascular dementia, there’s Lewy body dementia, there’s frontotemporal dementia. So these are all brain diseases.

Now, when we use the term dementia, we’re actually using that term as a broad term to. Refer to the symptoms, signs and behaviours that are associated with all of those brain diseases that I just mentioned. Think of it like. Getting a cold because we’ve all experienced that probably in our lifetime. And you start to show a variety of symptoms. But everybody comes down with different symptoms when they have a cold or even the flu. Some people get body aches and chills and fevers. So those are the symptoms related to a cold. Dementia. Are the symptoms related to one of the brain diseases that causes dementia? And they’re all kind of overlap depending on what the disease is that’s causing the brain damage. They vary a little bit from disease to disease, but there’s a lot of similarities to the symptoms, the signs and the behaviors that are associated with a brain disease.

Oh, wow. Yeah. Who knew that? It was so complicated. And I guess that’s where having someone like yourself who’s been focused on this for so long, I think could be a real advocate for people who are going through this. Share with us, if you would, your your story. What what brought you into this line of work as a as a field to really focus in on I’m guessing you have maybe a personal interest in or something maybe that might have kind of sparked your interest in it?

Well, that’s really where it all originated. When I was a young teen, my grandmother developed what they called back then senile dementia. And she was reporting not only to her family, but also calling the police three or four or five times a day, reporting that there were birds that were living in her mattress and coming out at night and pecking her face that were men breaking into her home to harm her. And they were stealing things from her. And she saw rats running along the walls in her home, and she was just constantly calling the police. And so after many episodes like this and the police did go out and respond to her call and realize that. It was just what she was talking about was just impossible. They eventually tracked my mother down and they came over to our house and I happened to be there. And they said the police officer said to my mother, you need to do something with this woman. She is a nut and we don’t have the resources to keep responding to these these hallucinations and delusions that she’s having. And there was something about the way he said it that stuck in my craw because I was close to my grandmother. She only lived a few miles away. I grew up with her, and I knew that she was the farthest thing from a nut that I knew. And that really bothered me that a professional would come over and just tell my mother that this woman was a nut when they’re supposed to be there to try to help them. And back then, we really didn’t talk about her disease. We all were very aware of the behaviors that we were seeing and the story she was telling. So when I got to college, I took a class in human behavior and I was told that was it. I’ve always been very fascinated by what makes people tick and why do people behave the way they do and what changes people’s behavior when they get in certain social situations. I ended up pursuing my degree in human behavior.

And then having kind of filed that whole experience with my grandmother in in the background. And it was something that just really stuck with me. So I had an opportunity to go to work for an assisted living and memory care facility as a community counselor. And my job was to kind of onboard the family of what life in the facility was going to be like for their loved one. And I did all the assessments and the. Having them move in and got all the paperwork done and went to visit them like in the hospital and just made sure that they were appropriate for the placement. And. I realized within a few years of doing that job how little people really understood the disease, just like that policeman feared for. And since then, I’ve had seven more family members succumb to one of the brain diseases that causes dementia. So I had eight family members. I mean, that’s like unheard of.

Most people – one- they think that’s daunting.

I’ve had eight. So between my personal experience and really knowing what families go through. And then my professional experience and my degree and really having a kind of a comprehensive understanding of how to help people. The last 25 years and to be honest with you, things really haven’t changed that much. People still don’t have their heads really wrapped around the day to day challenges that surface as a result of this disease. All the strange behaviors and the stories that are told and the false beliefs and all of this is the disease talking to us. Is damage being done to the brain? And so this is what I do is I help people understand what’s happening to their loved one, how to decode the behaviors, how to figure out what triggered the behavior, because that’s a complicated process and it’s not a one size fits all answer and really help them get back to what matters with this disease is spending. Quality time with their loved one and having a less stressful relationship. I’ve had so many family members over the years tell me how stressful and how much anxiety it creates because they don’t know what to say. They don’t know how to respond to some of these false beliefs that that that person believes and some of the behaviors that are that are displayed. So this is what where I come in and I help people. Learn a new set of skills and a new way to communicate with their loved ones so they can really enjoy the time spent together. This is a long, drawn out disease. It lasts for years. My grandmother lived with it for 20 years. The average person, depending on what type of brain disease they have. The average is 8 to 15 years. That’s a very long time to try to manage a relationship with somebody that you really don’t want to abandon. But with all the the challenges that pop up on a minute by minute basis or day by day basis are so challenging.

That if I could help make that experience easier for them, then they could enjoy their visits and have less stressful time with them because a lot of family members, they spend their time arguing with their loved one and fighting with them and trying to correct them and convince them that whatever they’re saying isn’t true and everybody feels the stress of that. So that’s that’s where I help from a psychosocial approach.

That’s good. Yeah. I mean, I my only real experience of that was when and I’m thinking, let’s say I was. Yeah, I guess I was a teenager too. It was my, my grand grandfather who would he would just sort of walk out of the apartment and just wander away and and I and I possibly thinking that he lived in Florida at the time, but he had lived in Michigan. And I think possibly he was even probably trying to find locations in Michigan. And so I know it was definitely stressful on my grandmother. And I know it’s there’s like so much to go on with this. I mean, as you say, there’s like so many different symptoms. And and I think people who are with loved ones are probably feel really not only stressed, but also helpless at times because they’re watching their loved one, you know, that they’ve known change radically. You share because I know I’ve seen I’ve seen like some movies on TV or even films where they depict some of the symptoms and and how people how dementia or Alzheimer’s, for that matter, affects them. Can you share some some a little bit more about maybe some of the common behaviors that are associated with dementia and and and maybe even then also how people can recognize them early on.

Sure. So this is kind of what makes diagnosing Alzheimer’s disease and some of the other brain diseases difficult.

Because in the very early stages of the disease. The symptoms in the behaviors and the signs are actually very, very subtle. And oftentimes they can be mistaken for just normal aging forgetfulness that we all will experience as we age, which is perfectly, perfectly normal and nothing to worry about. It’s really isn’t until somebody reaches more of the middle stage of the disease, that’s the the most common time that they are actually diagnosed by their doctors is when they’re already into the middle stages, because the symptoms and the behaviors have now become very obvious. And people can live with this disease for years and it will either go unnoticed or family members might just kind of dismiss it as, Oh, she just forgot where she put her keys, kind of thing.

The biggest differences between having a brain disease that causes damage is it’s not unusual for us to misplace something and then find it again. But with true brain disease and true dementia, that person will rarely misplace things. But let’s say they misplace their keys. And then let’s say a family member finds them and hands them to their house, keys to their loved one. Person may look at those keys and not have a clue what they’re supposed to do with them. Completely are confused and forget what the purpose of those house keys are. They wouldn’t know that if they went outside and close the door behind them in at lock that that was the tool that they were supposed to use to get back in their house. That’s a significant difference between having dementia and normal aging forgetfulness. So so because it takes a really long time for these. Symptoms and behaviors that become so obvious that you realize the next step is to go to the doctor. They’re already pretty much into the disease. And those symptoms, what you can look for. One of the very common things that people do is repetitive behaviors. I’ve had so many family members over the years tell me how frustrating it is to them when their mother, who has been diagnosed with Alzheimer’s disease, asks the same question in the same conversation over and over and over and over again, because that’s a common thing that they do. Or they might tell you the same story in the same conversation over and over and over again, because the damage being done to the short term memory is such that they honestly didn’t remember that 2 seconds ago. They either told you that story or they asked you that question.

So there are tools and techniques that family members and caregivers can learn to. Diffuse that situation. So those are things that I talk about in my book and kind of get off that topic. So there are several things people can do. There’s more than one technique. And as I mentioned earlier, that’s not a one size fits all. There are things that you can there tools that we can put in your toolbox to help you kind of redirect that particular situation. But if that doesn’t work, then you can try something else. So other behaviors are agitation, and if that’s not handled properly, that can easily escalate into a catastrophic what we call catastrophic reaction, which would be an episode of extreme anger or even some physical violence or violence. That’s an easy thing to trigger. So there are best practices for how to respond to agitation. There are best practices for how to respond to false beliefs. And this is a counterintuitive response. Most people’s gut reaction to. Having your grandmother tell you there are birds living in her mattress and they only come out at night and peck her face. The person that’s hearing that story would be in disbelief and probably react like, Grandma, what are you talking about? Do you understand how crazy that sounds? There’s no way there could be birds living in your mattress. Come on, let’s go see. Pick up the mattress. Look underneath it. There’s not even a hole in the mattress. But in her world of dementia, she 1,000% believes that birds come out at night and peck at her face, and there is nothing anybody can do to change that reality for her. It’s not reality, but it’s her reality. So you have to be very careful how you respond to a false belief.

Because again it can trigger a catastrophic reaction, especially. And this is another thing that’s common. My mother-in-law did this at our house one time. She was visiting and she had dementia. And all of a sudden she stood up out of nowhere and insisted we take her home because she believed her husband was at home waiting for her to come home and fix him dinner. Well, he passed away five years earlier. So we had to be very careful how we respond to that false belief, because keep in mind, if we had told her, tried to correct her and steer her back into our reality. It could have been like she was hearing her husband had died for the very first time and gone into a panic. So these are very important skills to learn for caregivers, and they’re also very helpful skills to learn for family members and friends because it’s kind of like that proverbial box of chocolates from Forrest Gump. Any minute, any hour, any day when you are with somebody with Alzheimer’s disease or any dementia, you never know what you’re going to get. Anything can pop up a behavior. And that’s the other thing that I think it’s important for people to know is. People mistake behaviors for trying to be difficult to be disobedient. I mean, it’s not that way at all. I mean, some people do get agitated, but to just intentionally be mean, that’s kind of a rare occurrence. And you see it most with a brain disease called frontotemporal lobe disease.

That affects your personality and your emotions and your reasoning. But with Alzheimer’s disease, which causes dementia, most people, they at some point lose their ability to communicate with. Everybody, your loved one, their loved ones, your caregivers in the way that we were used to, by verbalizing something or articulating something, they lose that at some point. And the only way that they have to tell us that there’s something wrong, something’s bothering them, something they want, something they need, something is through behaviors. That’s why I said we have to learn how to decode the behavior, how to figure out what it is they need, want, etc., and find out what triggered what triggered that behavior. And it’s almost like going through that process of elimination, trying to figure out what’s what’s going on. And it’s not always the same thing, even though you see a similar behavior. So living with Alzheimer’s disease nonetheless is extremely challenging because of all the symptoms that fall under this umbrella that we call dementia. And it takes some very specialized skills to kind of navigate through it and know.

And it’s also really helpful to know old habits of your loved one they enjoyed before because these all play into this new. Life of theirs. This new world of theirs. This new reality of theirs.

Yeah, absolutely. One thing I was going to ask is let’s say somebody know their family member, maybe, you know, their parent or some other close family, or sometimes it can be your spouse as has. Let’s say they get diagnosed with dementia. What would you recommend to them? What what? Other than, of course, following whatever their doctor recommends, what would be like their next step for them to take?

My recommendation would be to learn as much as you can about the disease. What to expect on a day to day basis. There are some wonderful resources out there, too, like the Alzheimer’s Association. They have a hotline number that if a family member is experiencing a situation that they just don’t know how to handle, you can call that number website and get advice from a professional. And understand the different behaviors and symptoms and signs that show up and then the possible meanings behind them. So again, you can kind of get to the root of what triggered that behavior. And I think one of the very important things to understand about Alzheimer’s disease, which is the number one cause of dementia, the most common brain disease that we are familiar with is. The hallmark, again, is affecting the short term memory. And when people have these false beliefs, the reason why it happens and this is the way I explain it and people really appreciate this explanation because they can really relate to what’s happening. So think of the short term memory is having an on switch and an off switch in the very beginning stages of Alzheimer’s disease. That person’s short term memory is on and functioning fine more than it’s off as they progress to the mid stages of the disease. Sometimes that switches on and sometimes that switches off.

So when it’s all of a sudden suddenly goes off, the short term memory is not functioning properly. And then the person starts pulling from their long-term memory because that stays intact by the end of the disease. The short-term memory pretty much is gone completely, and that person regresses back to a period of time from their long term memory, and that’s where they stay. And in 25 plus years that I’ve been doing this, everybody kind of ends up in a different part of their life. I’ve seen people regress to childhood. I’ve seen people regress to adolescence. I’ve seen people regress to the prime of their professional career. That’s what I advise people. Listen for the cues, because once that short term memory switch either gets shut off or is gone completely, you will kind of be able to figure out where they have ended, where they have gone to in their past based on what they’re talking about. If they’re talking like a child and talking about, where’s my mommy, where’s my daddy? I need to go home. I’m scared. You know, they’ve gone back to their childhood. My mother-in-law, when her short term memory switch was shut, was shut off temporarily. She regressed to her adolescence. And because of that, she didn’t recognize my husband as her son. Because in her mind, she was 12 or 13 years old. She hadn’t met her husband yet, had five children. But she knew she knew him. So she called him Otto, thinking that he was her brother. So if a family, if your loved one doesn’t recognize you at any given time, it’s probably because that short term memory switch got shut off and they’re back in a past part of their life. They almost always know that they know you from someplace, but if they can’t recognize you by your actual name, it’s because in their mind you couldn’t exist yet. Does that make.

Sense? Yeah, it does. Yeah. Yeah. And. And I’m sure it’s. It’s probably challenging and and and heartbreaking sometimes I know certainly like if if you’re not especially I can only imagine like say a spouse or a child with a parent and they’re not recognizing them. It’s hard. But then I think at the same time, if then you can meet them where they are, then that will probably make things a lot better for both of you and being able to, you know, navigate that part of their condition from then on, I suppose.

Well, with Alzheimer’s disease, that’s the recommended best practice. And we call it joining their reality. Based on everything we’ve kind of discussed today, I think people can probably understand why it’s the recommended best practice. The exception to that would be with Lewy body dementia, which is the one that. Robin Williams was diagnosed with a lot of the symptoms and the behaviors are similar to Alzheimer’s dementia. But the hallmark of that disease is hallucinations and delusions. It’s a completely different part of the brain than Alzheimer’s is. So with that type of dementia, it’s best to just be completely upfront with, oh, no, that’s not possible, and tell the person you’re having a hallucination. What do you see? Because I know you’re seeing something, but I’m not seeing it. So tell me what you see. But with the other dementias joining, their reality is the best practice because it minimizes the situation from escalating into a more serious situation. And as I said, there’s nothing anybody can do or say to steer that person back into our reality. What short term memory switch is off, even if it’s temporary? So the best way to handle that situation situation is just to listen for the cues.

And just go along with whatever they’re believing for that time. And unless they’re at the end of the disease in the short term, memory is completely gone. That switch will go back on eventually and then back in a world that aligns with you. But while it doesn’t, it’s really not going to do any. Serve any benefit for anybody to argue, to correct, to try to steer them back into your reality because it just is not going to work.

Yeah, absolutely. And yeah, there’s so much that goes on with the brain and this is just one aspect of it. I’m having memories of myself, of of other things can cause these same types of symptoms, too. And it’s not just dementia, like, for instance, like hallucinations. My father was an alcoholic and I remember as a teen he went through I guess he was going through withdrawal. And I walked in on him having hallucinations and it scared the crap out of me because I didn’t know what he was talking about, what he was seeing. And so I think even if you come across someone you know, who you know with dementia, who is having that stuff, I think hopefully if you can talk to the doctor and know that that is a possible side effect that they could have, then you can be more prepared, hopefully, especially if you’re if you got kids involved, that they don’t get freaked out because even though I was a teenager, it still freaked me out.

Oh, I can understand. And you are absolutely right, because alcohol actually is one of the things that causes can cause dementia. Every alcoholic gets dementia, but it actually is very common and it’s one of the only types of conditions that could potentially be reversed through recovery because Alzheimer’s disease, the other brain diseases that cause dementia are progressive and you don’t recover from them. But a person like your father would developing dementia due to his extreme alcoholism and he was suffering hallucinations and things like that. If he were to go into a recovery program and he became clean, as they say.

Those. That dementia could could disappear with the alcoholism. But it’s very rare for some of these to reverse once they’ve said it.

Yeah, absolutely. Is there anything about Alzheimer’s in general or dementia that you wish you had? Or I would say actually more of the support for people. Support for family members and things that you wish you had known when you first started out.

Well, yes. I ended up running a support groups later on in my career. For family members whose. Loved one was suffering from one of the brain diseases, and that was an eye opening experience for me. And I wished I had a lot of the knowledge that I gained through my support group. I did it for years in the very early stages of my career. That I gained from running leading the support groups because I really. Kind of. Even though I had eight of my own family members and I count many, many families the support group format. Just people just open up that necessarily reveal their deepest, deepest concerns and feelings. And when it was just like a business situation, when they were my clients and I didn’t have the extended relationship with them, they held a lot back. But in this group, it was no holds barred. They just and I learned so much about what people were really suffering through.

And one of the things that I discovered that I didn’t realize before was just how destructive having a loved one with Alzheimer’s disease or another dementia was to them. Tearing them apart. Watching their loved one deteriorate. It was very hurtful when they would tell me that my mom didn’t recognize me today. And I’ve been so dedicated and so loyal to her. And they were taking it very personally. So it opened up a completely new window for me to look through, to understand what this really is doing to loved ones that yeah, I had a glimpse of it before, but not to the degree that I think I gained that insight from leading the support groups.

And that’s awesome that it’s good that you have that experience. And, and I know in I think in any type of situation, being with people who are going through the same type of thing that you’re going through, like I attended grief support when after my sister passed. And it’s, it’s really comforting to be able to talk with other people who may be experienced, even if it’s not exact same thing. It could be something similar. And it’s like, oh, thank goodness. You know, I’m not I’m not the only one feeling these feelings. And so I can imagine that.

It truly is. And one of the common things I would hear from the attendees of the support group is a lot of people would express that they were depressed.

And depressed for a long time because of what this was doing to them, kind of going through this journey with their loved one. And somebody else would say, Oh, you are? Well, I kind of feel that way, too, but I was kind of embarrassed to say something, so that would open up. Now, I’m not the only one in the room that feels that way. And other people would say, Yeah, I am too. And and it’s that sense of camaraderie. And I’m not the only person that’s that’s feeling this way. And maybe there really isn’t something wrong with me. This is a normal reaction that a lot of that came out in support group environments. So I would definitely recommend support groups to anybody who is going through this with a family member, a loved one or friend that it’s really having a psychological impact, their emotional impact on them, because as you said earlier, you feel totally helpless.

Yeah, that’s for sure. Well, I know we’ve only really scratched the surface on this, but in the subject. But I do think we’ve covered a lot today. And if someone listening wants to know more, maybe they want to be able to even get a copy of your book or something. How can people get in touch with you?

A couple of ways? So I have been maintaining a blog for about seven years and you can go on to Facebook. It’s on Facebook and it’s the name of the blog is Not All Who Wander Need Be Lost. And I post a lot of tips on there and things that hopefully will be helpful and valuable to anybody who’s looking for guidance in this situation. My new book is actually available on Amazon, Barnes Noble’s other fine booksellers, and it’s called Truth, Lies and Alzheimer’s Its Secret Faces. And the reason why I added on that it’s secret faces because of all of these. Unpredictable things that pop up on a day to day basis that people either aren’t aware of or aren’t expecting. So I talk a lot about those things in the book and then how to effectively respond and react to a lot of the behaviors and those type of things. And again, I think the Alzheimer’s Association website is an excellent resource. They have that hotline for people to get help and a lot of valuable information as well.

All right. Well, I will be sure to have your information, and I’ll also put the Alzheimer’s link in the show notes as well. So you don’t have to Google it. You can have it right there when you’re referring back to this episode, especially if you’re not somewhere where you can jot that information down right now. So thank you so much, Lisa, for number one, doing the good work that you’ve been doing in the world and helping people in this area. And thank you for spending some time with us today and enlightening our audience. I appreciate it.

You’re very welcome. And thanks again for having me. It’s been a really nice pleasure to to be on your show and and enlighten people with this.

Absolutely. And thank all of you for listening and for watching and YouTube. And again, you can always go to Live, Love, Engage, podcast and check out other episodes as well as check out there’s a new platform. Well, it’s not that new. I guess it’s been around for a little while. It’s new to me. I’m new on it. It’s called Good Pods. And you can also find us there as well. So until next time, as always, I like to encourage you to go out and live fully, love deeply and engage authentically.

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