Caregiving is a challenging role, no doubt, especially when it comes to communications. Whether you have a neighbor, colleague, friend, or a loved one who has dementia or mild cognitive impairment, one of the first symptoms you notice is how challenging communicating with them can be.
Watch Pam Ostrowski, author, national speaker, and CEO of Alzheimer’s Family Consulting, as she walks through these caregiving truths and how to address them. Thanks to Koelsch Communities for sponsoring this valuable webinar on caregiving.
In Communicating with a Person with Dementia, we discuss:
- How and why those with dementia struggle with communications
- The 3 best ways to communicate with a person with dementia
- The easiest way to persuade a person with dementia to cooperate
So grab your notebook and have a listen! Remember, you can listen to this video while driving, cooking, or getting ready for your day. We’re ALL about helping YOU provide the best care possible.
The TRANSCRIPT of the webinar is below the video.
Webinar Transcript
Communicating with a Person with Dementia
SPEAKERS
Paige Fairbanks-Gunn – Koelsch Communities, Pam Ostrowski – Alzheimer’s Family Consulting
Paige Fairbanks-Gunn Koelsch 00:03
Good afternoon, everybody. Thank you so much for coming today and joining us for our communicating with someone with dementia. Our next webinar session is going to be Thursday, August 3, which is going to be talking about preparing for assisted living documents, Medicare, Medicaid, and more. I’m Paige Fairbanks-Gunn, I’m the relationship manager for Arizona for Koelsch Senior Communities.
I’ve been working with seniors since 1997, and have worked with over 4000 families. Koelsch Communities operates in eight different states. We are family owned and operated since 1958. We have independent living, assisted living, memory care, respite care, and also de services.
All of our assisted living communities offers exceptional care throughout and we have so many resources. We also operate with all of our assisted living with 24 hour on site nursing care. So I offer lots of resources including our speaker today.
Our speaker today is a national caregiving speaker and consultants. She provides a path to relieve the fear, anxiety and overwhelm that family members experience when a loved one is diagnosed with dementia. She is the founder of Alzheimer’s family consulting.
She’s a certified Senior Advisor, a certified dementia practitioner, and is certified in dementia care. She is also the author of author of the highly rated It’s Not That Simple: Helping Families Navigate the Alzheimer’s Journey (available here on Amazon and on other book outlets), which is based on Pam’s 14-year dementia and Alzheimer’s caregiving journey with her parents. Please welcome Pam Ostrowski.
Pam Ostrowski 01:54
Thanks so much, Paige. And thank you, Koelsch Communities for this opportunity to share many of the conversations and tips and guidance that I provide my clients one on one for their situations. And if anybody you know is wants to have more detailed conversations or learn more about our topic today, or other topics that we’ll be covering, please be sure to look up my book. It’s Not That Simple: Helping Families Navigate the Alzheimer’s Journey..
The reason is that the book is going to let you take in the information as it comes versus you having to just try to absorb everything in a webinar, because that can be really difficult. So I wanted to let everybody know that we will be this is being recorded. So you will be able to refer back to it. So let’s get started.
Pam Ostrowski 02:56
Okay, so again, thank you, Koelsch. Thank you, Paige for hosting this and sharing information that is so important to everyone who’s attending and pretty much anyone who knows a person with dementia.
Today’s topic about communicating with a person with dementia is really about anybody that you run into, you could have friends, you can have aunts, uncles, grandparents, parents, who are struggling as they get older with short term memory with the ability to grasp words or complete tasks.
We thought that this would be the perfect start of our kind of our late summer early fall series. So these are the next four series topics in the series. And you’ll notice that we’re going to start talking about how do you know when it’s time to move into assisted living or memory care? I get that question almost every day.
The next one is what’s it like? Like? And that’s what Paige Can you help us out with two we’ll have that conversation that’ll be very interactive about, for instance, my mom’s experience and my dad’s experience and, and you know, what Koelsch provides?
And then, you know, how do you prepare? What do you need to have in place before any of that happens. And then lastly, in November, my favorite, it’s turkey stuffing with a side of dementia, planning for the holidays with older loved ones and understanding and being compassionate and kind and setting things up so that it’s easy for them. So yes, this is my book. It’s Not That Simple.
This slide shows mom and this is me wheeling mom around. So just so that you know that this particular topic about communicating is so important, from my perspective, because my mom went non vocal in she started in 2007 to really struggle with words and stopped speaking pretty much in 2008.
She stopped saying sentences, though she might point to something but she just shut down. And so we had to find really creative ways to communicate with her. And she was in there, there’s no doubt if you said something that she didn’t like, she’d let you know.
And she would laugh if you told a joke. So it’s important for us to remember, even though we’re struggling and having to readjust our communication skills, they’re still in there. And we can figure this out people, we don’t have to get angry or frustrated or depressed or sad. Now, this is this is part of the journey, that all of us will get older, all of us will probably have some cognitive issues based on how long we’re all living.
So let’s all just kind of work through it and commit to that, versus, you know, kind of, I know that a lot of people get frustrated or have a lot of emotions. We’re going to talk a bit about that as well. So I always like to share this, this slide, because almost every I was talking to someone this morning, and she’s like, you know, I think everybody knows somebody with cognitive impairment or with dementia. And I said, you know, I tend to agree with you, and here’s why.
Right now, and 2023, there’s six and a half million Americans with who have been diagnosed with Alzheimer’s. Now, if you’re like me, and you don’t want to be diagnosed, you don’t go to the doctor, you don’t go for a diagnosis. So that’s just the diagnosed number.
So you can imagine how many people might be out there with Alzheimer’s but not actually being diagnosed. The other thing is that by 2029, basically all the baby boomers will be 65. And over, which means that 22% of Americans, that’s one in five people will be over 65.
This communication thing is pretty important. Because we’re going to all be talking and trying to figure each other out, and trying to communicate and move on with our lives as we age successfully versus getting frustrated. And I know my dad would get so frustrated with my mom, and it really broke my heart. Because it wasn’t her fault. There’s nothing she could do about it. So that’s the reason why this topic is so important.
And so I don’t usually introduce science into my conversations with you guys. But I thought it would be important, maybe to help with some of that empathy and compassion to understand what’s actually happening in the brain. Here’s a picture of the brain. And over on the left-hand side, you’ll see intelligence, judgment and behavior. So that’s the frontal part of the brain. Memory is here and temporal side of it. And then language is back is back here. And so there’s a lot more components to the brain, obviously, and there’s a lot more components, there’s actually I couldn’t find the graphic that breaks down every section of the brain and what it’s responsible for.
But just looking at my mom, and her journey, and every journey is different. So just because my mom lost her words eight years before she passed, does not mean that your loved one or your person with dementia is going to have the same situation. And the reason why I say that is because it really depends on where in the brain, the amyloid plaques and tau proteins are in total protein tangles, I should say that where they are and what part of the brain they attack.
So in general, it begins in the hippocampus, which is back over here, and the temporal lobes, which is up front, so that’s why you start to see more behaviors such as anxiety, or, or irritation or apathy or depression is because we’re that’s where the behaviors come from, or resentment or frustration, and the frustration usually comes from the fact that they know something’s happening, it’s not good, and they can’t fix the problem, right?
So we would be pressed, everybody would be frustrated with that. But these areas that it does affect affects short term memory, it creates difficulties with concentration. So that’s why they might ask the same question multiple times, because they’re not they’re thinking about the response, or they’re thinking about, about what the were individual words are, and they’re not, you know, they’re not able to concentrate. They don’t remember that they asked the question.
So there’s a lot of dynamics. It’s a very complicated disease, from the perspective that it’s unique for everyone. And then on top of that, there’s no control or no way to know what part of the brain is suffering. And so each part of the brain is responsible for different tasks and capabilities.
You know, one of the other things that I hear and this happens more with men than women is depression. So there will there can be depression in someone with for multiple reasons with someone with dementia. One is the disease itself and then the other is just the fact that gosh, you know, if you can’t remember things.
You know what, what does that mean for your life? And if you can’t, if your relationships are built on memories, but you’re struggling with the short-term memory, how does that affect that relationship or those relationships? So it can be pretty scary too and that creates anxiety, which is another symptom.
So I kind of wanted to give you a little bit of science class to start out with, so that she could understand what’s happening in the brain. And, and one of the reasons why this, this webinar is called How do we communicate?
Now you’ll see sometimes on YouTube and other places that might say, how do you talk with someone who has dementia? But when I talk with Paige, I’m talking at her, she’s talking at me, Are we communicating? So communicating means conveying a message, and the message being received, assimilated and then responded to?
Communicating versus Talking
I’m a words person, I wrote a book for heaven’s sakes. So I’m all about what words mean, what. So we’re talking about communicating, not talking. Now, in general communication is done in four possible ways. There’s visual, so someone might say, Oh, I see what you mean, that person is most likely going to show you something.
If I was talking about my phone, I would pull my phone up and point to the phone. Because I’m visual on I think you’re visual, too, right. And that’s an assumption we make. That’s not necessarily accurate. Like, I’m a visual learner. And when I have to listen to a podcast, I don’t remember most of it, to be honest with you.
We assume the other person learns and thinks and communicates the same way we do. But guess what? It’s another difference that makes us unique and wonderful human beings.
Another one is auditory or oral? And then that’s when you hear a person say, I hear what you’re saying, or are you listening, my mom used to say that all the time are you listening? Reading and writing. So it’s a bit of visual and aural combined. So if you’re reading out loud, that’s a, that’s a big deal for memory capture. Because when you read out loud, your ears are actually paying attention. And your mouth is working. And that’s taking that memory of whatever you’re saying. And it’s actually taking it from short term to long term memory. So that’s a that’s a great way a memory aid for you an extra tip, but not part of this conversation.
And then lastly, is kinesthetic. So kinesthetic is let me write that down. Right? So it’s all about how do you write and type, right? And so if you really want to remember something, you would write it down. And that subvocalization that’s that voice in your head that says 623111. So it’s reading it out loud, quietly, to you in your head. And then once you’ve written it down, say it out loud 623111. And what that does is it puts it into long term memory. And so that, you know, you’re saying,
Well, what’s this have to do with communication, spouses, parents, adult children, I can promise you that one of the biggest challenges people have is, is this concept of repeating repetitive questions, not remembering that they’re going somewhere. If you help your loved one or your person with dementia, with writing things down, saying them out loud, you too will both be happier and less frustrated, because you’re using these tools. So the more the merrier.
Or however you want to do it, if you can practice this on a routine basis, you will notice that your communications are better. So oops, we so that was that was tip number one.
People with Dementia Remember Emotions
Tip number two, those with dementia. Always know how they feel. And they remember emotions. So they don’t remember what triggered the emotion but they do remember the emotion. So when you’re communicating with that individual, you really need to change your mindset about how what your expectations are and how you’re going to approach this.
Because if you keep your expectations with this person being fine, that they are just who they were 10 years ago, you’re going to be sadly disappointed and they’re going to get their feelings hurt, because they’re going to feel like they failed you and what are they going to remember the next time you walk through the door, that you made them feel badly? And that that maybe you know, they should just be quiet? Maybe they shouldn’t even try to communicate with you because they felt badly the last time they did, nobody wants that.
So just take each moment as you as they react to you. And if a particular set of words doesn’t work, try different words. I know that sounds really basic. Sick. You’d be surprised how many times I hear people say, I told you the doctor’s appointment was at 10am. The doctor’s appointment is at 10am. No, I told you.
And what’s interesting about that we’ll talk about this in a little bit is the tone, your tone changes, and you get more and more frustrated, because for some reason, we seem to mirror back at somehow that our inability to communicate with this person is our fault that we’re failing, when in fact, it’s not a failure, it’s just a matter of getting creative with the words that we use, and trying to work together to get the message across.
This is about communicating a message and getting it received. It has nothing to do with you. It has nothing to do with your abilities, it has nothing to do with their abilities, it just has to do with this nasty condition of dementia. So the other thing is, is we really want to focus on creating moments of joy whenever we can. So make something funny or fun.
For instance, when I put my mom’s sweater on backwards by accident. And so I would help her with it because she always wore a sweater or a jacket or something. And I would turn I turned around and I looked at her and I said, Do you want to wear the seams on the outside and I showed her the seam on her on her sleeve. And she started laughing and shook her head. And then I had to take it off of her and put it back on.
It’s one of those things where we live in such an intense world. We’re constantly stimulated with voicemails, and emails and TV and radio and podcasts and Oh, my there’s just so much.
When you when you talk with someone, when you communicate with someone with dementia, they’re right there in that one moment. They’re not getting stimulated, they’re not getting overstimulated, they don’t care about email, they don’t care about the calendar, and they don’t care about their appointments. All they really care about is where they are in that moment.
You have to join them there if you want to communicate with them and get a reaction that you want. So we just have to remember that we want happy emotions and, and good emotions, strong emotions, love, kindness, compassion, grabbing someone’s back, that’s communication. By the way, you don’t always have to use just your mouth, you can rub a person’s back, and that’s communication or stroke their hand. You know, any of those things are ways to communicate.
Now this poor guy, he’s trying to argue with someone with dementia. And I promise you, you will never win an argument with someone with dementia, because they’re going to be rooted in what they believe right then and there. And you can’t change their minds.
So this is how we speak differently with someone with dementia. You have to speak so they understand, even though you think that well, this is clearly the sky is blue. You know that? That seems really straightforward. What’s wrong with you? Why don’t you understand that doesn’t matter.
That’s the other thing is we tend to as cognitively capable people, we tend to want to explain everything or understand everything, and there’s really no point there’s nothing you’re going to benefit from in trying to understand the why this is part of the dementia brain condition, part of Alzheimer’s, vascular dementia, Lewy body dementia.
Tips on Words and Phrases to Use with a Person with Dementia
And so what we need to do is use short phrases, right, a lot of times, we’ll say and that I’ll test you right now. And then you have to repeat after me. So first of all, what we’re going to do is we’re going to stop by the doctors, and we’re going to go to that appointment, then we’re going to go into the pharmacy and get the prescription after we get the prescription. We’re then going to go for lunch over at your favorite place. I’m thinking I’m going to have the ham sandwich, but I’m not really sure you always get the eggs. And then maybe we can go grocery shopping afterwards.
Alright, everybody repeat what I just said. So you picked up pieces of it, but they’re probably not in the same order I gave them and they might have missed a few spots. So let’s keep everything simple. Would you like some chocolate? Or would you like coffee? Those things are singular phrases, and then give them time to process.
Our average reaction time is pretty quick, almost to the point where we interrupt people because we already know where they’re headed, and we want to get our answer and because we’re trying to move fast here and be productive and efficient. Well, that doesn’t work in the world of dementia, because someone might need 20 or 30 seconds to respond. And you just have to be calm. You have to be comfortable sitting there and waiting.
It’s like, Well, do you want coffee? And they might be thinking about it. First of all, they’re thinking, what do I first of all? What’s coffee? Okay, got coffee. So what do I want to know if I feel like coffee, I really rather have a soda. But I don’t know that word. They may say water or tea or something like that. But that whole thing took like 20 seconds. So being patient when you’re communicating with someone with dementia is so so very important. Keep the conversation simple. Use small, short phrases. Don’t give them more than two choices.
A lot of times you’ll hear something. How many people have been to the Cheesecake Factory or honestly, any restaurant? What kind of dressing would you like? Well, I don’t know. What kind do you have? We have blue cheese, honey mustard brands 1000. Island, locale balsamic vinegar, add raspberry vinegar brat. You know, I’ve, I’ve forgotten ranch. I don’t know if I said ranch. You go through that list and it’s like, did you say honey mustard? No.
Pam Ostrowski 21:09
So we think about these lists, and, and we tend to communicate, we’ve gotten used to communicating that way. And that’s going to be our downfall with someone with dementia. So the key here and it breaks my heart. I work with families, one on one, to help them work through these situations. And they constantly catch themselves in these behaviors, making the conversations much more difficult affecting their relationship with the person with dementia.
And so I have actually, it’s one of my best friends, her mom has dementia, and the daughter, her sister is a nurse. And she just will not accept that, that the mom needs to be communicated with differently. And she’ll say, Well, I just told you that I don’t know what’s wrong with you. And that’s not nice.
And yet somehow it’s that relationship over the many years that it formed as tainted the ability to show compassion and empathy, to show that you know, what you just said didn’t work. So try something else stop being so, so connected with your words, and instead, help them understand what you’re trying to convey? What’s your message?
You know, that’s the other thing and I talk about show don’t tell is, is if my tummy hurts, I’m going to rub it. So you can ask them, does your does your tummy hurt? Did your stomach hurt and rub your stomach? And then say owl? And they’re going to either shake their head No or they’re going to nod their head Yes.
Or you can say, show me where it hurts if they’re if you think that they might be in pain. But most of all, you know, avoid getting frustrated with them, because they’re going to ask the same question over and over again. I mean, you know, it comes down to how many people are actually in that situation? And you know, what I am going to? I think I’m going to ask you guys this poll question.
How many of you so go to your if you’re not on the same window with us get to the window and answer the poll. So how many of you get frustrated when talking with an older person? And we will tell them we promise right page. So there’s yes, there’s sometimes or not often? So? You know, it looks it’s kind of tied? Look at that.
Yes, 44% sometimes get frustrated or upset with the person with dementia. Come on, we have 21 people here and let’s get a few more answers here. So that we see what the data looks like for real. So when somebody asks the same question over and over again, and you have to respond, that typically triggers frustration.
You know, ultimately, that’s what we’re trying to address here is making sure that that doesn’t happen, because the bottom line here is that frustration ruins a relationship. And that happens in any relationship, whether you’re dating, whether you’re married, you know that that’s going to be a consequence of that, that turmoil that can happen.
And what’s a trigger for someone with dementia is asking that question over and over again. And I actually had one client say, I think he’s lying. I think he’s faking it. And I said, no, there, he’s not lying. He’s doing the best he can. So please don’t assume that that he’s somehow doing this on purpose to make you upset. You own that response of how you react to how he communicates.
That’s a different issue, right. And that’s part of what I do in my consulting is, you know, where is your frustration really coming from. And then the thing that we don’t realize, so let’s say you have a family event, and you know, if your loved ones in a wheelchair, or if they just walk in, and they’re kind of unstable, and you sit them down, and then everybody else is talking and chatting, but the person with dementia is not, it’s because they’re overwhelmed. And they’re overstimulated.
You should always have a place for them to go, someplace quiet, they need to, you should always have a caregiver with them, to help them if they have to go to the bathroom or something. And that person’s job is to be on them like white on rice is to make sure that they’re comfortable. And if they look uncomfortable to move them to a different room and let them you know, kind of decompress.
Recognize the Presence of a Person with Dementia
One of the things that we do though, is we ignore them, and we talk over them. And so when we’re when we are hosting something, and we’ll talk a lot more about this in the holiday, on November 2 than done the planning for the holidays with an older loved one is, you know, you’ve got to think about what the how they’re processing information, and the fact that it’s slower, and that you’re going to have to be patient with them.
Make sure that you educate everybody who’s there in the room prior to them arriving, that you know, they’re going to, they’re going to take a little longer to process information.
When you get to mid to late stage dementia, especially with Alzheimer’s, it’s really important for you to position yourself, when you walk into a room where you have, say if you meet a neighbor who’s struggling with dementia, to meet them, eyeball to eyeball and make eye contact and smile, because they might have some anxiety and they might not know who you are, or they just for that moment.
It’s not typical for someone to completely forget another person, even with dementia, it can happen gradually, it can happen one day and not another. That’s the other thing about this condition is that it is variable in the capacity, the individual has four tasks and short term memory. I mean, they may remember something that happened 20 years ago, but they can’t remember that they’re supposed to pick up their fork. Again, it’s a very complicated disease.
By positioning yourself at whatever level they’re at, you can make that human connection. And then you can introduce yourself. So I every time I saw my mom, I would give my mom a kiss on the cheek. And I would say hi, mom, it’s Pam or I might even say if I saw that she was kind of having a sleepy day, I would say it’s your daughter, Pam, your favorite daughter, I’m the only girl. So that’s kind of an inside joke in our house.
When In Doubt, Act It Out
If you do find yourself getting frustrated, there’s a few tools that you can use to you know, help you help you get through it. Show don’t tell, when in doubt act it out.
The reason why I say this is we mom fell, and it turned out that they did a bone, they wanted to do a bone scan to check for osteoporosis. So medical staff are not trained on dementia from doctors, nurses, hospital staff. So this is one of the other values of you watching this is that when you learn you can educate them, or at the very least you stay with them to make sure that the communications are done properly.
Because this nurse said, “lay down on the on the bed on your side. They’re going to do the bone scan.” and just looked at her and my mom’s just standing there kind of like she hadn’t said anything. And I so I went over and I padded the bed because it’s like a tray thing that goes over you. And so I padded the bed and I went like this I put my you know like when you were little kids lay me down, go to sleep. And so I put my head on my hands. And she sat down and then she learnt leaned over and I helped her.
But the nurse would never have known to do that and she wouldn’t have known how to act it out.
And I think that’s sad that our medical profession, professionals are not getting that kind of training, but it’s not required and they’re very busy. And so I’m not sure what we’re going to do about that aside from hope that they come to webinars like this one.
Now if there’s a task that’s complicated, so you guys go to a restaurant, my mom we would take her to Cheesecake Factory Dad and I would and when she would sit down you could see that she was looking around trying to figure out the lay of the land.
So I would purposely unroll my silverware from the roll up and the napkin. And then I would take my fork out and I take my spoon out, I take my knife out, and then I take my napkin I and I did this very deliberately not like showy but deliberately so that then she would, you know, kind of casually Watch out of her eye and do the exact same thing. And then she would look at my dad and see him like paging through the menu, and she would do the exact same thing. And but she couldn’t read at that point.
She couldn’t process the words on the on the menu. And so I would say, Mom, I’m not that hungry. Do you want to split the salmon? That’s what we usually get. So I’m aiding her in being successful in dining out by kind of leading her down the path. And she would always say, Oh, yes, that sounds wonderful.
Whether or not she actually, I mean, she loves salmon. So it wasn’t a big deal. But, it’s about aiding them in a dignified and respectful way. It’s not, what are you doing using your fork? I’ve had stories like this, guys, this is not I’m not making this stuff up. Or, you know, you use your fork for that you don’t use a spoon.
My dad was pretty brusque. I mean, he’s a retired Lieutenant Colonel. And he would look at her like what was wrong with her, and I kick him under the table, as daughters can do when their dads misbehave. And so that, you know, trying to educate him, he just he didn’t understand what was wrong with her. And it was heartbreaking.
Like all of us, they have good days and bad days. So you may see them in there. You know, how many people have said, she’s fine, or he’s fine. There’s nothing wrong with them. And it’s like, how much time did you spend with them? Oh, just 30 minutes, it looks like okay, so spend like four hours with them. You’ll see what what’s happening. And so those individuals tend to, to see only the good days, and only the good behaviors, as opposed to both good and bad. And it does fluctuate.
I had a daughter whose heart was broken, she said, my mom’s never going to say I love you again. She’s never going to say my name. It was all doom and gloom. And I said, Well, your mom is malnourished, she’s dehydrated, and we need to get her back to Ground Zero from negative 10.
Once we do, let’s then evaluate where she is cognitively. She called me a few weeks later, well, actually, several weeks later, when we finally got her stabilized at cash community, and she said, Oh my gosh, my mom called said I love you by my name. And he was just wonderful.
So let’s not project negativity, oh, this is a terrible disease. Yes, it is. But you know what, you and I are smart enough to figure out how to get your message across and work with this individual, and to be compassionate. That’s really what the message is here.
And then I mentioned earlier that that tone is so important. So you might, you know, usually when we get frustrated with someone, our tone changes, and we get a little bit snotty or snippy. We get louder, they get more aggressive. And that’s not good.
So if somebody asks you a question, the same question twice, and you’ve answered it the same way twice, use different words, excuse me, use different words. And instead of saying, Does your stomach hurt, say, Where does it hurt? What are you feeling okay? Because the problem is that they can hear you and they can internalize for most cases, I mean, there’s always going to be exceptions, but they but they can’t respond, right, they can’t find the words, it’s all a mess and the jumble up there.
What’s happened is the brain cells have died because the synapses have been broken by the amyloid plaques and tau tangles, but they can process that you’re getting frustrated that either they’re going to mirror that and get frustrated. If you’re anxious, they’ll be anxious because it very much mirror emotions. But if you’re kind in loving, they’ll be like, I don’t know, I don’t know how to respond.
And so we just have to it’s communication takes longer with someone with dementia and we have to give them that time because rushing is not going to help. So and then, if you do feel frustrated and you feel like you know, okay, this is not happening and I can’t, this is not going to work. Then just give them a kiss. Tell them I love you and leave the room.
Go walk outside, go for a walk, do something that allows you to kind of get a grip on your emotions and realize that this is about creativity. This is about figuring out other ways to communicate differently with them.
Now, if your loved one is living at home, or whether they’re in a memory care community or in assisted living, and they’re struggling with cognitive impairment, then it’s really important when you visit, once again, identify yourself at their level.
So if they’re standing up or sitting down whatever they’re doing, so that they can make eye contact with you. And then if people are visiting, so a lot of times families will come to visit, especially during the summer time. And if that’s the case, bring them forward individually, because the further down the path of or the journey because, you know, with Alzheimer’s, it can be a four to eight year journey after diagnosis.
My mom had dementia, unlabeled, undiagnosed dementia for six years and then had was diagnosed with Alzheimer’s and lived another eight years. And then she progressed from kind of that early mid stage to late stage.
Visiting a Person with Dementia
And so when visitors come, a lot of times, we’re just like, oh, you remember, this is your granddaughter, and this is your grandson and, and there’s like five people standing in front of them. And again, it’s feels overwhelming. Be sensitive to the fact that they can be overstimulated quickly, and they can be overwhelmed really quickly. Introduce each person, set them aside, make sure you’ve prepared them for the maybe the lack of enthusiasm.
Now, you may get really lucky. And you know, there your person might be like, Susie, it’s so good to see you. And that might be the good day. But there could be a bad day where she’s like, I don’t know who you are. And, and or he might say, you know, I don’t remember you. And that’s hard for children. And so what we have to do is coach them on. Okay, so it’s possible grandma or grandpa are going to say that.
Try to think of a few things that they might remember. And then you can ask them, oh, well, I’m the person who did this with you, or I’m the person that did that with you. And that can either trigger the memory, or they can process that language and say, oh, this person knows me. Okay, that means I know them. That means I should be nice, right? So even at that basic level, they have that capacity. But it’s all on how you tee up the situation. And how you train people to respond.
When a person with dementia might be very honest and say I don’t know who you are. And just as an aside story, I have a neighbor whose father, she was very close to him, and he had Alzheimer’s. And they had come back from lunch. And she brought him back to his room. And she went into the bathroom to sort something came back out. And he said, Do I know you? Now remember, I said they were close, right? And this was when she was in her 60s. So this was easily a 40, obviously, a 60 year relationship. And she said, You know what? Gave him a kiss and said, You do know me? I’m someone who loves you very much.
Do you see how the reaction could have gone the other way? Where it would have been hurt feelings and a reaction of Well, Dad, I’m your daughter? What’s wrong with you? So and I’ve heard those things. So just what she did is she reacted with what would what would make this gentleman smile, what would make him feel good. And that’s the intent we need to bring to all communications.
When leaving, so a lot of people especially if your loved ones in memory care and voided, I struggle with this one. And so do a lot of my clients, especially the daughters when it’s time to leave.
And I have one daughter client that stays two to three hours. I said, What? And she’s like, well, there’s things I need to do and so there’s other reasons for that. Right? She’s afraid to lose her and she wants to make sure that she feels the mom feels comfortable and everything.
I said when you leave How do you leave? And she’s so she we went through all of that. And I said, All right, well, let’s try something a little easier on both of you. Let’s just say I’m going to I’ll be right back or I’ll be back. I have to leave right now. Give them a kiss.
I used to tell my mom I have to take the dogs out to go potty. I’ll be back. I didn’t say when like don’t say I’ll be back in a few hours or I’ll be back on Tuesday or I’ll be back tomorrow. Any of those timeframes temporal capability and recognition disappears pretty early on and dementia so they don’t know what to I am as they don’t know what Sunday is. And I’ve seen so many instances where families have gotten so frustrated, and it’s not fair to anybody. It’s like, oh, they have dementia, give them a break, right?
Just say, I’ll be back. We don’t need to be specific in this situation. So hopefully that makes sense to you. I just want to check the chat for a moment and see if anybody has any questions. So be sure that if you have questions, I’m going to take a breath and drink. But if you have any questions about or have a situation you’d like to share, go ahead and either pop that in the chat or open your mic.
Creating Moments of Joy with a Person with Dementia
When we push comes to shove, we, you need to create moments of joy. This is the most important part of having a person with dementia in your life, or having a family member who needs to learn about these tools, in order to realize that, when we remember, when all we remember is emotions, then those have to be all good emotions.
And, you know, I’ve had so many people say, Well, how do I do that, and, and they’ll sit in in the person’s room and talk to them. Talk, let me rephrase that talk at them. Because they think that’s like something to do. And it’s like, now bring flowers, and the pull all the petals off and drop them into a bowl of water, you know, do something that sensory, anything that smells bring little jars of coffee and cinnamon and, and anything strong that smells and then do a sniff test. I mean, these are little simple things that allow you to engage with them. That’s experimental. That’s something you can both do.
And by the way, when you’re doing that, you’re making a memory for you with that person. And that’s something you’re going to look back on. And like the all these pictures, so that’s mom, November Thanksgiving time of 2012. And that Turkey is a hat. And I didn’t think she remembered that it was a hat.
I brought it to her and we were playing with its head and stuff like that and flipping it upside down and doing things to it. And I walked over to the nurse’s station to ask one of the aides a question, I turned around, and here she is putting this turkey hat on. And it was so cute. And she’s smiling and she knows it’s funny.
So I want to make sure that if you take anything away from this, to realize that they are still in there, it’s just that they can’t reach back out easily. And as the disease progresses, that gets more and more difficult for them. But you have to engage in a way that allows them to respond. And their response might be patting you on the knee, it might be a smile, it might be you know, a little playful punch to the arm or it might be you know, a gesture to hug. Those are ways of communicating.
It doesn’t just have to be vocal. We’ve gotten so vocal in our world today. So it is important. Now if you’re preparing for an outing, this little bonus tip, you’re going to if your loved ones in the care community, especially but even if they’re at home, you need to make sure that you understand what they like to eat. tastes change.
I know so many people who have who used to love peas and hate carrots and now love carrots and hate peas. So it’s really important to because we when we take somebody out for a meal, we have this expectation that it’s going to be fun and they’re going to enjoy it and this is just going to be wonderful.
Well that’s a pretty high bar to have for an experience with someone with dementia. Just take it as it goes and see what happens. So it’s really important if you’re going out to have a full time companion now that can be a family member. It doesn’t have to be a professional aide or CNA or anyone like that.
That can be handy if you are going to be away for many hours though because that person can take them to the bathroom and make sure that they come back and work through the logistics of toileting so that you don’t have to, you’re going to have to provide a quiet place for them to go to kind of decompress if they’re coming to your house.
You know, like the Cheesecake Factory. That place is so noisy it even bothers me. If you can’t hear that makes it even worse. So we want to also make sure that everyone’s prepared, as I mentioned earlier, whether it’s grandchildren, you know, adult children, friends, neighbors, whoever that might be that is around this individual that they understand the basic rules of compassion, kindness, changing up your words that you use to communicate. And frankly, just holding someone’s hand and walking alongside them, that’s a great way to communicate. And it’s communicating kindness and love and compassion.
So give them a place to run away to, to escape to, but just make sure everybody knows where they’re at, as opposed to them walking out the door and not knowing where they are. So that’s a problem.
And the other thing is that you always want to look at the environment that you’re putting them in, is it safe, I mean, we, we tend to look at the environment, how we are, and, and how we can function in it. But it’s really important to see the world through their eyes, sitting at a high top, instead of sitting at a booth, for instance, or sitting at a table where it’s easier to get out left or right versus in a booth where you have to scoot to kind of think about these things, because we’re trying to make this experience pleasant.
If you create a complicated situation, you then have to communicate your way back out of it. So if I told my mom, you know, scoot out of the booth, we’re going to go to the bathroom, she would just look at me blankly like, I’ve no idea what scoot means. So then I would have to, you know, pop over with the book, you know, and scoot over myself, and then, you know, gesture for her to come with me.
The idea here is in making their lives easier, we make our lives easier. Make sense? Okay. Now, frankly, communicating can be exhausting. I mean, really, this is this is, especially for spouses, when you live with somebody who has cognitive impairment, has dementia has Alzheimer’s, trying to get through the day can be really challenging and totally exhausting.
Dementia Caregivers Need Time Off
So I want to encourage you to get respite, you know, find the things that bring you joy, and peace, and allow yourself to rest and relax, whether that’s listening to a podcast or some music, reading a book, you need to take that time for yourself. And the best way to do that you have two ways to do it, the short term way is to get a companion who can you know, make sure that your loved ones saved, do some activities with them so that they get tired out and sleep through the night.
Another important thing while you get a chance to relax, whether that could be going in gardening, it could be you know, tinkering in, in, you know, the garage, whatever it might be, you know, your loved ones safe. And you know that you can do your thing, the fewer times that you do that, the more that you increase your health risk. And the more likely you are to have a stroke have some sort of coronary or cardiovascular event. I have diabetes and get cancer. I mean, there’s statistics on this. And I’ve shared those in previous webinars, but it can really take a toll on you. And that’s the other reason why we thought this would be a great conversation to have with you.
Getting help is really important. And it’s good for both of you. Because a lot of times I think caregivers, family members think that this is their job, you know, this, I’m supposed to do this. This is what I signed up for. No, you didn’t. And it’s okay that you don’t feel that way. And it’s okay to realize you don’t have the skills or the training, and that it’s exhausting. So that’s something you have to internalize on your own time. But you have to be kind to yourself. Because if something happens to you, then what’s going to happen to your person with dementia.
We need to realize we can’t do it all. Avoid the I’ve got this I can do this. This is this is what I’m, I’ve heard people say I’m honored to help my mom. That’s all well and fine, but it’s wearing on you. So we need to have balance, right? I’m doing a work life balance webinar in a couple of weeks. And it’s focused on just that, you know that that we have to as humans realize our limitations and understand that caring for someone with dementia is much harder than caring for someone who has another type of disease.
Here are some examples of resources if you’d like to do some research on I will share these on my website when I share the video. But the Alzheimer’s Foundation of America has activities, and it’s called the teal room. They also have a free magazine called Alzheimer’s today, I’m published in several of them. And I have the link here, if you need the link, or as I set up with that in the email, the Alzheimer’s Association loved them, they do a lot of great research and very, very good at education.
And then, you know, there’s lots of caregiver support groups, you know, there’s Memory Cafes, there’s local memory care communities, like you could give Paige a call and say, Hey, I’m in wherever you’re at. And she would probably be able to connect with one of the cash community resources, and one of the outreach people and say, Okay, who do we know that can do this, or, you know, and this communities, I mean, they network, they know everybody. It’s really an opportunity, if you need help, there’s plenty of people to help you, you just have to ask, because when we we can’t know that you need help, just by sitting there.
So lastly, if you want to have a conversation about your situation, specifically, as part of attending this session, you will get a free 30-minute consult with me. It’s one on one, you bring a couple of your predominantly biggest issues that are concerning you. It can be anything communications, care options, what to do about certain behaviors, how to know, you know, we’re going to talk about this in August, how you know, how do you know it’s time when it’s time to move.
So there’s a lot of things that that you can, you can ask about that we can get you on the right path. So that’s a one on one via zoom, you can also learn more about me my story and get more tips and guidance on Alzheimer’s family consulting. And then I’m also on Facebook and LinkedIn. And there’s lots of videos on my YouTube channel, you just in the search bar, you just type in Alzheimer’s family consulting, and you should see my logo of the person helping the person in the wheelchair, on the path. That is it for the slides.
Paige Fairbanks-Gunn Koelsch 52:27
We do have a question. Great. Grant has a question. And this is a great question. And maybe we can kind of tag team on this. How do you tell your loved one they can’t leave the memory care facility that they live in?
Pam Ostrowski 52:44
Yeah, so I’m assuming they’re saying they want to go with you. You know, why are you leaving, I want to go with you. And the biggest challenge we have in communication, I believe, is that we take a personal literally, and this person who has dementia knows that they want to make a change, they want to they want to go with you, they don’t know where you’re going, it doesn’t matter. It’s just like, well, I don’t want to be left behind. And that tugs on the heartstrings.
My advice when they say that is to change the topic and say, I’ll be back, don’t worry, I’m not going anyplace fun, I’m just going even say you’re going to the bathroom, depending on the level of dementia that they have, they may or may not remember that you even visited, so it’d be a whole new visit. But I usually it’s all comes down to timing of your visit.
What I would do with my mom so that I didn’t have that conversation, or even with my dad, I’d be like, Okay, I got to go take the dogs out, I’ll be back. But I would also come for an activity, do the activity with my mom. And then we’d go have ice cream or whatever we had for a snack. And she loved ice cream. And then we would it would be time for dinner. And I’d Wheeler into the cafeteria into the dining room and make sure she was all set and had her silverware and then give her a kiss.
And I’d say you enjoy your dinner, I’ve got to go wash the car, or I’ve got to go get gas or I’ve got to go shopping or whatever it was. And she was fine with that. So it’s how you tee up the exit. That’s the challenge. And so if you’re like okay, I’m going to leave, we’ll visit you again soon. That’s not going to give you the result you probably want for you or them.
Paige Fairbanks-Gunn Koelsch 54:45
And that’s what we do on Grant, what we do in our communities. And we had a perfect example of this happening. It was in a different setting. I was with a spouse yesterday at the hospital. His wife is in the hospital and And it’s a secured area and she’s talking to her and she’s at the exit. And I said, this is not going to work. We’ve got to, you know, let’s take her into dinner now. And then you just give her a kiss and let her know that you know, you’ll be right back and we’re going to exit out.
And then, she’s redirected by other things that are going on and dinnertime. In our communities, what we do is, like you said, Pam, start come in for an activity. And then when it’s mealtime, it’s a redirection of a caregiver comes and gets your mom or your loved one, and then they just slide out the door. You don’t even necessarily have to tell them you’re leaving. That’s not the best course, is to just don’t tell them you’re leaving, you just kind of become out of sight.
Pam Ostrowski 55:45
Yep, yep. And you can even like I said, I mean, one of the easiest ways is to say I have to go to the bathroom, the caregiver then takes them and walks them over to dinner, they sit down, as long as they don’t visually see, don’t go back and say goodbye. That’s just irritates the situation.
Now, I’m going to extrapolate from your question. Grant. Because a lot of people will say, Well, you’re lying to them. And the bottom line is, is that this is about an act of kindness. This is about allowing this person to maintain the highest level of happiness possible.
So why is it lying? Is this is deceitful, you’re deceiving someone. We’re not deceiving them. We’re trying to figure out how to keep them happy while and ourselves feeling calm about leaving, not guilty. And so it’s like, Alright, so what’s the easiest way for both of us to separate? Because a lot of times it’s hard to leave. And so that, do you have anything on the line? The accusations that some family members say, Well, I’m not going to lie to my mom.
Paige Fairbanks-Gunn Koelsch 56:54
Well, yeah. And I call it the therapeutic fibbing. And it’s always the best course to be kind than to be right.
Pam Ostrowski 57:02
Absolutely. And in my book, I always talk about do you want to be happy? Or do you want to be right? And that’s true of arguing it’s true of leaving, it’s true of so many things. You have to choose what’s going to make you both the happiest and not worry about the traditional, you’re not dealing with a traditional communication with them.
You’re not lying to somebody who’s 20 years old, you know, you’re lying to someone who has a brain condition, and they, they want something different, perhaps, but it’s really about distracting them, and getting them to do other things and be engaged in other activities.
And that’s the beauty of memory care communities is that mom, her caregivers that at Rock Creek were always you know, come on, let’s go over and change your shoes. I mean, it didn’t matter what they were doing. But you know, if you said ice cream, I was like nothing. Ice cream was the was the focus. So you have to change how you think about how you how you perceive this person then their needs.
Paige Fairbanks-Gunn Koelsch 58:12
And usually redirecting with cookies and ice cream. I’m telling you, you’ll win. You’ll win every time.
Pam Ostrowski 58:17
Yeah, exactly. But sure you grab a cookie on the way out, though. The cookies, ice cream, but usually you can sneak one for yourself as well. So do we have any if no one has any other questions, we can go ahead and wrap up and be respectful of your time.
Just a reminder that on August 3, we have our next dementia caregiving presentation, so mark your calendars for “How to know it’s time to move to assisted living or memory care.”
These are really big questions and we get these a lot so we thought we would talk about it. So if you have other people in your life that would benefit from these types of webinar, guidance and tips. Please invite them just forward them the message that you get from us and then they can sign up so please do that if if you see fit.
Okay, well, thank you again, Paige very much appreciate the opportunity and thank you for hosting and, and giving everyone a chance to have a place to to have to listen and learn and to participate. So I appreciate that.
Paige Fairbanks-Gunn Koelsch 59:29
Everyone Have a good night. Thank you. All right.
Pam Ostrowski 59:32
Thank you. Bye bye.