The Challenges Caregivers Face Every Day – Encore

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30-plus years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Thanks for joining us today for another edition of the Truth, Lies Alzheimer's Show with your host Lisa Skinner. That's me. And I really want to spend some time acknowledging our fearless caregivers out there in the world and acknowledging what a difficult, difficult job this is. Probably one of the most difficult jobs anybody will ever take on in their lifetime because caring for people with Alzheimer's disease, related dementia, cognitive impairment, cognitive decline, a constantly changing brain, especially when they get to the mid to latter stages of the disease, is so heartbreaking and so challenging. And the thing that makes this caregiving journey so difficult. And it's difficult for actually anybody who's involved. It's difficult for family members and friends. And even if they are not the primary caregiver, just visiting can be presented with so many unexpected challenges because you never know what behaviors or symptoms are going to show up during that time. So, let me talk a little bit more in depth about some of the struggles and the unbelievable challenges that caregivers face when caring for people who live with this disease. Ask caregivers, caring for people living with Alzheimer's and dementia can be so unbelievably challenging on a minute-by-minute, hour-by-hour, day-by-day basis. So what is the best way to manage the unexpected, the unpredictable, the behaviors that will inevitably show up when you least expect them. What is the best way? Being prepared for anything and everything. And how do you go about doing that? Well, one way is to know your person. Know your loved one. Know the person you are caring for. Create a consistent routine for them and don't waver from it. Familiarity is their security. So, they like to be in a routine. They like to have repetitiveness. They like familiarity. It makes them feel safe. It makes them feel secure. So, that's one way. Know the history of your person. Their previous likes, their dislikes, their social habits, their habits of when they used to like to take baths or showers and what time they want to eat breakfast and just their daily routines and know these people inside and out. You can be prepared through knowledge, education, and by assembling a toolbox to handle situations as they arise. And that's gonna come from experience and paying attention and see what strategies and techniques work for any given situation. Now, I've said before, not every strategy is going to work for every single situation that arises, even if it's the same occurrence. So, it could be a situation that arises that you use one technique and it works, and then that same thing happens the following week and you try that same technique, but it doesn't work. So, the more strategies and the more tools you have to pull out of your toolbox to try different things, the more power you're going to have to find something that's going to defuse that situation at that time. So, being prepared. And by going through these experiences as you go through this journey with the person you're caring for, for or your loved one will make a huge difference for you. So, let me give you some examples. What would you do if you planned to give a shower to the person you're caring for, which you do, I don't know, have been doing for a very long time, several times a week, and most of the time without issue? But on this particular day, you lead the person that you are caring for to the bathroom. And you're going through your little routine of turning the water on and making sure the temperature is right, and you have your towels ready and your soap ready and your shampoo ready, and you're all set to Give your person a shower and they walk by the mirror and absolutely freak out and become very anxious and nervous and angry and dig their heels into the bathroom floor and say, "I am not getting in that shower." And you have no idea what triggered that reaction. No idea. So, let me give you an example of a real-life phenomenon that we call stranger in the mirror. Now, this is a phenomenon that happens routinely and regularly and is very common. When a person living with Alzheimer's disease and related dementia sometimes looks at their own reflection in a mirror, they see that reflection as being a younger version of themselves because their mind has gone back to an earlier period of their life. They don't recognize themselves. They think it's a stranger in this mirror looking at them taking their clothes off, and there's no way they're going to take their clothes off in front of the stranger in the mirror. So, they flat out refuse to do it. Now, as a caregiver, if you didn't know about stranger in the mirror, and this is a real-life, brutalized phenomenon that happens on a daily basis, on a daily basis with people who live with Alzheimer's disease and dementia, you would— you wouldn't even consider that that could have been the trigger of that refusal to take a shower. Because you never heard of it before. I mean, you would never in a million years think that a person living with dementia would look in the mirror and not recognize their own reflection, see a younger version of themselves and think it's a total stranger invading their space when they're just about ready to take their clothes off and get into a shower naked. So, what do you do? My advice to you is to start all over again. Lead your— the person, your loved one, or the person you care for. Back out of the bathroom and get them busy doing something else while you go back into the bathroom and cover that mirror up with a sheet or a towel. So, when you bring that person back into the bathroom, there's no mirror for them to look in. So, they just walk right by the mirror that's covered by the sheet or the towel. Without incident and you successfully move forward with the shower. So, my point here is you learn these things through education and knowledge. That stranger in the mirror is a real phenomenon that happens on a regular basis to people living with Alzheimer's disease and related dementia. Because of the changes going on in their brains. So, it's actually a simple fix, but you have to know about it. So, you will think of that as maybe being the trigger to what just happened. Case in point. Okay. Now, another common situation Imagine the situation is you are preparing to feed the person you care for. And you prepare their meal and you put the food items on a white plate. And you take it to the table and set it down in front of them so they can start enjoying their meal. And you set that plate on a white tablecloth. So, you've got a white plate with some food items on it sitting on top of a white tablecloth. Now, if you did not know this, that people living with dementia have a very difficult time discerning when there's no contrasting colors separating things. So, in this case, it's a white plate sitting on a white tablecloth, and they cannot separate the plate from the tablecloth, and it all just looks like one big blob on the table, let alone being able to separate what food is what and how they're supposed to eat it. So, how do you solve that problem? One of the common strategies is to put the food— use an opposing color plate against whatever color your tablecloth is or your table. So, for example, if you have a white tablecloth and you want to serve their meal, use a green plate or a red plate. Those are very common and popular. So when it's sitting on the table, they can tell where the table ends and the plate starts, and then they can look at the food and decide what it is they want to pick up and eat. So again, if you didn't know that they have trouble discerning when the same color things are blended together, you wouldn't know that that might be the problem and why they refuse to eat what you're trying to get them to eat. So, again, distinguishing things against the same color background, in this case, a white plate on top of a white tablecloth. So, the fix here is to use an opposing color for the plate than what the tablecloth is. That way they can distinguish. Where the plate actually is in relationship to themselves, and it doesn't just fall into this black hole that becomes the entire table to them. And then the other recommendation, because it just makes things so much simpler for them, is only offer a couple choices at a time. So maybe have 2 choices on that plate, not 6 different things, because their minds cannot process information the way we do with healthy brains and the way they used to when their brains were healthy. They can look at a couple of items and then say, "Okay, I'm going to choose this one." So, the less choices they are forced to make, the less stressful it is for them. So that's another tip for you. Only offer a couple of options at a time. If they finish, you know, the two that you put on the plate, then you can add something else. And that makes mealtime so much less stressful and frustrating for them because they just don't process, they do not have the capability of processing information the way they did when they were healthy. Here's another situation for you to ponder. So, what would you do if, let's say you live with your mother and your mother has been suffering from Alzheimer's and dementia for several years. And for the last For 50 years, every day at 6:00 a.m., she took her dog out for a walk. The same road, the same path, the same routine. So you didn't really think too much about it because she's been doing it routinely for years. And she continues to do it even though she's been diagnosed with Alzheimer's disease. And you're there as her caretaker and supervisor to make sure that she's always safe. But she loves her daily walk. She's been doing it for a long time. So this one particular day, she takes the dog out just like she has for so many other mornings, and the dog comes running back home dragging its leash, but no mom. And you— absolutely panic. What has happened to my mother? Why did she not return What's the dog? And why's the dog come running back? So, you are just in an absolute panic. So, the point to this story is, if you didn't know that at any given second their short-term memory switch could shut off like a switch to a light bulb, You might not consider that they seemed perfectly fine when they left to go for their walk, and somewhere in the process of the walk, that switch to their short-term memory flipped off, and they simply could not recall who they were, where they lived, or how to get back home, and are completely, completely lost. Loss. So you know mom is out there somewhere trying to figure out which direction she is supposed to go in, but she can't remember who she is. She can't remember her name. She doesn't recognize the neighborhood or the road she's standing on or the direction that she needs to go to get back to her home. It's all just a confusing fog because that short-term memory switch just out of nowhere flipped off. So now she is pulling her memory from her long-term memory bank because those stay intact for the duration of the illness. So what can you do? There are several things that are available. For this exact situation. And oh, by the way, this happened to my mother-in-law. This exact story that I just recited to you happened to my mother-in-law. This is a true story that happened when my sister-in-law was taking care of my mother-in-law and she took the dog out for a walk just like she had been doing for 60 years. That short-term memory switch flipped She could not remember who she was. Fortunately, in our situation, a neighbor saw her, of course had known her for decades, and went running up to her and said, "Mary Ann, Mary Ann, it's Dolores. Don't you know who I am?" And I mean, she didn't have a clue who she was or where she was. So anyway, the neighbor called my sister-in-law. And the story ended without incident. But my sister-in-law never ever again let her take the dog out for a walk after that happened, because she didn't know about the short-term memory switch could just flip off at any time of the day or night without notice. And that person just absolutely would not know who they were, where they were, and this happens all the time. You hear about it in the news. Man with Alzheimer's disease is lost. How could that happen? Because the short-term memory switch flips on and flips off, and it does that a lot starting in the middle stage of the disease all the way through the end. By the end of the disease, They basically have no short-term memory left whatsoever. It's a long process though. So, these are some of the tools that are available. You can buy a GPS tracker and have them wear it on their person. So, if this did happen to have— happen to you or the person you cared for or your loved one, You can track their location using a GPS tracker. There's a Safely Return program that is available in pretty much all communities. You can register the person that you care for or your loved one and have them registered, and if this happens, you call the police. And they have all of the pertinent information already registered and can go out searching. You can go out and look for them because, again, this is a routine that they've been doing for a long, long time, and this one time they just were in the middle of the routine and all of a sudden their short-term memory, like, short-circuited and they couldn't remember anything. And so maybe you know the routine they took, the path they took, and just retrace the steps. And then the other thing you can do is check with the neighbors. This neighbor happened to recognize my mother-in-law. She looked very confused. She was kind of turning around trying to figure out what direction she was supposed to go in, had no idea. And the neighbor was looking out the window and saw this whole scenario and knew what to do and knew who she was. This happens frequently. So, I'm just warning you, be prepared for it and expect it to happen on any given minute of any given day. Because it happens frequently. It also happened to my grandmother. And her story is she was living alone by herself, and she had recently had a diagnosis of what they called back then senile dementia. And she routinely took her car out of the garage and drove it to the grocery store to get whatever groceries she felt she needed. So she left this one day, pulled her car out of the garage, and was very lucid at the time and started driving the direction of the grocery store that she had a million times before. Well, guess what? That short-term memory switch of hers flipped flipped off out of nowhere, out of the blue. And she didn't know who she was. She was driving her car down a four-lane highway going in the direction of the grocery store, and that short-term memory switch of hers flipped off just out of the blue. So, what happened? She believed— that she had already entered the parking lot of the grocery store. So what did she do? She parked her car, put it in park, and got out of the car in the middle of this 4-lane highway and started walking around trying to find the entrance to the store with all these people honking at her and, and coming towards her from the back in in their cars wondering, "Why is this woman parked in the middle of the road and wandering around?" So fortunately for us, a very concerned motorist saw this whole scenario unfolding, got out of his car, and went to see what was going on with her. And she didn't have a clue who she was, where she lived, what direction he was supposed to go in. So he called the police and they took care of it. Another perfect example of the short-term memory switch flipping off without notice, and the person has no idea who they are, where they are, or what they're supposed to do. Again, this happens frequently. It's a very, very, very dangerous situation for people living with Alzheimer's disease and related dementia to be in, especially for us because you never know when that short-term memory switch is just going to arbitrarily flip off. It could happen instantaneously and they could be put in a very dangerous situation like my mother-in-law and my grandma. So, let me give you a couple other examples because I want you to build your toolbox and know these things because if this situation arises when they're in your care or when you go visit your loved one living with Alzheimer's disease, you'll say, "Oh, that's the stranger in the mirror phenomenon that Lisa Skinner was telling us about." I know what to do. So, would you know what to do if all of a sudden the person you cared for started screaming at you and accusing you of stealing her valuable jewelry because she couldn't find it and believed that since she couldn't find it, You must have been the culprit who took it. You stole it from her. Because did you know that suspiciousness and paranoia are very common symptoms of Alzheimer's disease and related dementia? Very common. Most people who live with Alzheimer's and dementia suffer periodically from suspicious beliefs and paranoia. The likely scenario is that she put the jewelry somewhere for safekeeping, forgot where she put it, subsequently went to find it, could not, So, jump to the conclusion that you, her caregiver, or you, her daughter, just robbed her. That's the only reasonable explanation that makes any sense to her. So, guess what? Unfortunately, you get the blame. So, what should you do about that situation? First thing you want to do is assure that person that you are going to help her find her jewelry. You know how important it is to her. And that you are going to do everything in your power to try to recover it for her. So reassurance is very vital to this situation. That you are certain that it's somewhere in the house and that she is safe. Then you want to start looking for it and letting her see that you are looking everywhere you can possibly think of to find the missing jewelry. This is where it would be most helpful if you had ideas as to where she likes to hide things when she's lucid and thinking clearly. So, when she's in a forgetful episode like this, you could check those places and see if maybe one of those is where she stashed her jewelry. And keep in mind, this is very, very important, she absolutely, 100%, believes in her mind that you took the valuables, and nothing you say or do will convince her otherwise. So the best approach here is to go along with that delusion, keeping calm, continuing to reassure her that you will help her find the jewelry And then follow through with that. If you can't find the jewelry in a reasonable period of time and she's continuing to accuse you and getting more and more agitated and more upset, then you can try telling her, well, I think now it's time for me to call the police and have them come over to investigate And while you're waiting for them, suggest to her that you go, and she can help you, start getting her supper ready. So you want to redirect her, get her mind thinking about something else. Of course, there's no police coming because you never did call them, but the objective here is that Number 1, she'll either, hopefully she'll forget about the jewelry incident. It'll just completely like flush out of her mind. And move her into something else, like a new activity. Ask her for your help, that while you're waiting for the police to arrive, you're going to start her dinner and you could really use her help. So, will she come into the kitchen with you and help while you prepare prepare her supper. You can have her fold towels. You can have her shred lettuce for a pretend salad. There are all kinds of things that you can do to distract her from being focused on that missing jewelry. Because trust me, once they get an idea in their mind, they don't let go of it very easily. They have to be distracted and then become pivoted and interested in something else. So, that's one thing you can do. The last example I'm going to share with you today, and this happens very regularly too, how would you respond or react if your loved one or the person that you cared for started calling you by a different name all of a sudden? I unfortunately have counseled so many family members over the years and have led many, many, many support groups for family members with loved ones suffering from Alzheimer's disease and related dementia. And one of the things that they have consistently shared with me over the years is how hurtful it is to them to be called a different name when they're the daughter or they're the son and they can't believe that their mother or their father doesn't even know who they are and they are so hurt by that. Um, I can understand feeling that way, but what I want to reassure you is it's not them not recognizing you. This is the disease you're seeing firsthand. And again, that short-term memory switch flips on and flips off, flips on and flips off continuously starting about the mid-stage of the disease and worsening to the very end. So what happened here? While you were visiting or caring for the person that you care for, Once again, that short-term switch flipped off. And what happens when that happens? They pull from their long-term memory because long-term memories stay with them throughout the disease. So, let me kind of paint a scenario here for you. So, the short-term memory switch flips off. And all of a sudden they're looking at you and they start calling you a name that you don't even recognize. You never even heard of this person. It's a completely foreign person. But why are they calling you that name? Because they have no short-term memory for that moment, for that period of time until it comes back. They're pulling from their past memories, and you don't know what the timeline is of the past memories that they're pulling from. You don't know where they landed, in other words. So perhaps they're calling you a name that they associate with that time period that they have regressed back to. Maybe you're a friend, maybe you're a brother, maybe you're a sister. And think of it this way: you could not possibly be an adult child of hers, because in her mind, if she's only 15 or 16 years old, she hasn't even gotten married yet, let alone had a, had a child that grew up into an adult. It hasn't happened in her mind yet. So, she knows that she knows you somehow, some way, that you are connected to her life and you fit into her— the puzzle of her life somewhere. She can't quite pinpoint it, but you remind her of her best friend, Deborah, and that's why she's calling you Deborah. Because in her mind, an adult daughter of 40 or 50 years old doesn't even exist yet if she thinks in her mind she's only 15 or 16 years old. So, if you didn't know about the short-term memory switch flipping on and off throughout the duration of the disease, you wouldn't even consider that that is why your own mother is not calling you by your right name and why she doesn't recognize you. So, all of these things that I'm telling you today are so important so you can be prepared for just about any situation that arises. So, the more you know about the changing brain and what the damage being done to the brains of the people living with these brain diseases, Now, if that short-term switch did flip off and you didn't realize it immediately, my suggestion to you is listen for the cues of the time period or the timeline that she has now gone back to in her mind. So, if she's talking about, "Oh, Mom, my mom's at work." But she should be home pretty soon, so let's start cleaning up so she doesn't see the mess we've made while we were here visiting with one another. Obviously, she's talking about a time period way before you entered the picture, and she's somewhere back in a past part of her life. So listen for the cues, and you can tell that that switch flipped off based on what she is talking about, and you can pick up clues as to what time period she is now in, in her mind. So hopefully that makes sense. If you understand that these situations that I have described to you today happen regularly, starting from about the mid-stage of the disease all the way through to the end-stage, stage, then you will have a better understanding of what just happened. And you can do what we call join their reality, go along with it. You can't bring her back to yours. It's impossible. So, to make your journey, your care experience with your person or your loved one less stressful and easier to bear, keep these things in mind. And when that short-term memory switch flips back to on, trust me, she will once again remember who you are. And it'll all be forgotten. But next time that happens, you'll know Uh-oh, that flip just switched off and now she's back as a child living at her parents' house and wondering where her mommy is. And when she starts talking about these things, you'll know exactly where she has regressed back to. So listen for those cues. Um, I want to talk to you now about Bruce Willis. This is my What's New segment for the show. I happened to see on a newscast a couple days ago his wife being interviewed by a reporter, and she was giving an update on his condition. Her name's Emma Heming Willis. She's the wife of actor Bruce Willis. And she provided an emotional update about her husband's struggle with frontotemporal lobe dementia. This was on the Today Show on September 25th during the kickoff of World Frontotemporal Dementia Awareness Week. Now, as most of you know, Bruce Willis was diagnosed with this form of dementia last February. And she says the journey since then has not only been unbelievably difficult for him, but also for the entire Willis family. Every single one of them has been impacted in some way by his disease. In the interview, she said, labeled dementia, she calls it a family disease. She emphasized the significant impact the diagnosis has had on the family as a whole, pointing out that it's not just the person diagnosed who suffers, and understanding the specifics of his condition has been both enlightening and challenging for them. While it offered insights into what was happening with Bruce, it brought no rest keep it from the emotional toll that it's having on them. She expressed the uncertainty surrounding whether Bruce is fully aware of his diagnosis. The nature of frontotemporal lobe dementia affects self-insight, making it challenging to discern if the individual is cognizant of their condition. And I have I mentioned once before that about 50% of people who live with Alzheimer's disease— now this is a different brain disease— are aware that they have it and about 50% are not. Beyond the interview, Emma has been open about her experience on social media platforms. In an Instagram video, she delved into the day-to-day challenges and the effort to find moments of happiness amidst adversity. She's probably encountered a lot of the scenarios we talked about today. And while her social media profiles might paint a rosy picture, the reality is an everyday battle for normalcy for herself and their 2 children. The challenges of caregiving extend to all aspects of family life. Emma pointed out in her discussion on the Today Show that caregiving is indeed a family disease. It has imparted lessons of love, patience, and resilience to all of them. And the emphasis on the broader family impact resonates with the experiences of many families globally grappling with similar diagnoses. The journey has been nothing short of a roller coaster for the Willis family. Despite inherent challenges, Emma Hemming Willis continues to focus on awareness and advocacy, underscoring the importance of understanding and supporting those living with dementia and their families. This journey may be arduous, but through unity, resilience, determination, the Willis family seeks to navigate these uncharted waters together. You can do that too. Through education and knowledge and knowing what to So you are not alone out there, my caregivers and my family members. These are some of the similar situations that other people are experiencing too. And find your support group so you will know that you are not alone and that there are many, many others who are navigating the heartbreaking challenges of living with Alzheimer's disease-related dementia and some of the other brain diseases that do cause dementia. So I really hope this information has been extremely helpful for you today to help you be better prepared for what is next on the horizon in your world. And before we say goodbye, I'm going to turn the mic back over to Ken. He's got a couple announcements for us, and then we'll say goodbye for this week and look forward to having you back on our show next week for another brand new episode of the Truth, Lies, and Alzheimer's podcast. Have a great week, and I will be back in just a moment. Can— thank you for listening to The Truth Live and Alzheimer's Show with your host Lisa Skinner. This program can be found on our website at passionateworldtalkradio.com under the shows tab. You can also search for us on YouTube, and if you want to find Lisa on Facebook, you can search Lisa Skinner Author. If you're interested in Lisa's books or training programs, you can find more information about those at truetheliveandalzheimers.com, and all of her books are available on major bookselling platforms, including Amazon and Apple Books. And with that, Lisa, take us home. Okay, thanks again, Ken. Thanks again, everybody out there for listening. Listening to this episode this evening. I do want to acknowledge and appreciate everything you do in this very heartbreaking world of Alzheimer's and dementia. Make sure you take good care of yourself, and hopefully it will make the challenges that you come up against a little easier to bear. I hope you all have a wonderful week, and I look forward to having you join us again next week. Thanks again. Bye for now.

Thank you for listening to Truth, Lies Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime, but you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa Skinner's Minding Dementia support group. We're a community of like-minded caregivers, and we're here to help.