Transcript

Inspira hosts Dementia Author Pam Ostrowski

00:00 Cheryl Catale

And so I know everybody’s excited to hear what you have to say. So without further ado, I’m going to give you the zoom. Perfect. Well,

00:17 Pam Ostrowski

Thank you so much, Cheryl. And I really appreciate the opportunity to talk with everyone. And I want to tell you a bit about my experience. Basically, in 2001, my mom showed some really unreasonable signs of anxiety, and to the point where I had to take her face in my hands and say, Mom, you know, it’s okay, we’re, you know, it was a bill that my dad was mailing and she was just, it’s not going make it on time and really unreasonable behavior for her. And anxiety and short term memory and task recollection are the top three memory issues with Alzheimer’s in particular.

And so I basically went through this 14 year journey and definitely had some issues with dealing with grief and loss because my dad, who had dementia at the same time as my mom had Alzheimer’s, but my mom was further ahead. So it was really only the past two or last two or three years for that. And then mom lived another four years. So I’m going to share my screen and kind of go through some tips and information that you will hopefully find helpful.

So my company that I created to support family members on the Alzheimer’s journey in the dementia journey is Alzheimer’s Family Consulting. So I wanted to create something where I can help people who are on the same journey that I was on, because I didn’t really have anyone. There was no real way to find information. And there wasn’t much in the early 2000s, about dementia or Alzheimer’s, there were no tools, not as many communities certainly as there are now that was, you know, now going on 20 years ago.

I moved my parents from New Hampshire to Phoenix in 2001. They were able to live in their own little condo out in the West Valley was out by you, Cheryl. And they were able to live there until 2007. When mom was getting bad enough and dad really couldn’t care for her. So I went through the “it’s time for us to move” or “why should we waste money on rent?” whole living arrangements transition conversation.

I went through how do you take away the keys to the car. And instead I prefer to say giving up the keys because I never took them away from him. I just explained to him that his safety was an issue. And so there’s ways to word things words are hugely powerful.

And I wrote the book, It’s Not That Simple and published it last year in October. So it’s one year anniversary is coming up. And I wrote it because I wanted to provide you, the family member, a guidebook on how to navigate this journey for everything from the science behind Alzheimer’s and dementia,  and Alzheimer’s is a type of dementia and  there’s 70 different types, to how do you have the living arrangements conversation to how do you communicate which is today’s topic, to building your care team, dealing with the emotional roller coaster, Visiting your loved one. The holidays are coming up and you know, how do you how do you celebrate the holidays with someone who has dementia? And then finally, the last chapter is when the end is near – how the story ends, so to speak.

And so I wrote the book in her own is a tribute to her and my dad because he had cardio vascular dementia, rather. And so he really kind of struggled with memory and he had a different kind of dementia. She was sweet the entire time. But she was non vocal from 2008 to 2015. So for seven years, she didn’t say sentences we didn’t have conversations, it was just very much I learned how to communicate with my hands and my expressions and my tone of voice. And that is the world that we lived in.

If you guys would put in the chat what whether you have somebody right now who’s in a community or has been diagnosed with Alzheimer’s or dementia. If you can put that in the chat, that way, I’ll have a better idea of how to tailor this conversation.

05:14

So a lot of times, and the reason why I created this presentation, is that we struggle as family members with this issue of communicating with someone who looks completely normal. And who appears for all intents and purposes to be in fine shape, until they ask you the same question three or 10 times. And that’s when you realize we’re in trouble. And there’s something wrong here.

But worse yet, I was doing a presentation last night to a group of family members. And they said, I’m just so frustrated. And that’s what happens, right? I had one person in the Dementia Q&A group I lead, say, “I think he’s making it up.” And I had to step back and say, Look, I know he’s not well yet why is he able to be fine one moment and then not find the next? I think he’s making it up. And I said, “Why would he do that?â€

And this is kind of the pattern of early dementia, their earliest phase is that they seem cognizant, and then there’s things that they don’t remember. And that’s really those amyloid plaques and tau proteins, blocking the centers and portions of the brain to prevent them from functioning fully. The definition of dementia is that two or more brain functions are no longer working properly. And so that can be tasks memory, short term memory, words, any of that type of symptom.

And so as loved ones, we get frustrated really frequently. Because we see this person, they’re in and out of cognition potentially. And so instead, you have people who visit them who talk louder, like somehow that’s going to make a difference.

We use the same words over and over again, bear in mind that this disease actually has a mechanism by which it stops the access to certain words. So if your loved one says “I need to go to the bathroom,” and you say, “then go to the toilet, it’s down the hall and on the left,” well, first of all, they’re probably not going to remember down the hall and on the left.” And so they’re going to come back, and they’re going to say “I have to go to the bathroom.” And you’re going to say “it’s down the hall and on the left”. Again, they’re not going to remember that because down the hall, and on the left are words that are blocked, and I like to use that word, because it’s like they can’t process them.

Now, here’s the catch. If you’re a family member, you don’t know which words they process and which ones they don’t. So you’re not sure what depending on the day, whether those come and go. That is the uniqueness of dementia and specifically of Alzheimer’s is that we’re in a position where the disease is so variable by person. It’s unique. What would happen to Cheryl’s mom wouldn’t happen to my mom. I had someone asked me last night, well, you know, is it a given that, that they’ll go non vocal? And I said, No, with my mom, we had, you know, 55 other people in the community, all of them could talk up a storm, but not my mom. So it’s unique to your experience.

What I try to do is we walk through those emotions and because that creates a lot of frustration, and sadness, and grief and anger and all sorts of confusing and conflicting emotions. And that’s why I work with families to help them through that. So you know, it part of this challenge is that you can feel like, you know, I can’t believe this is happening to me. And if you feel that way, I totally and completely can empathize with that, because my mom was my best friend.

And now, you know, in that situation, before she passed, I had to guess what the situation was. Fortunately, she was in a care community where they were trained and could pick up on her cues once they got to know about her. So I’m just reading some of the chat. Um, physically fit. Yeah. And so so the, we’ll talk a bit about this about physical fitness. Because there are symptoms of pseudo dementia, I don’t know if you guys know about that, I’m going to kind of go rogue on the slides here for a second.

10:15

But pseudo dementia is the result of an issue with hydration, toxins and other factors. So some sort of whether it’s heavy air pollution, or chemicals or mold or any of those things. So outside influences, you know, a lot of stress, lack of sleep, you know, the usual things that you would expect. And so when we look at those, they can actually change how the brain functions. In particular, hydration is critical. And most men don’t drink enough water, women tend to drink more, but we probably don’t drink enough. So everybody stopped for a moment, pick up your bottle of water, your glass of water and take a sip. Well done, Cheryl.

Because the brain actually shrinks, it gets dehydrated, just like a grape turns into a raisin. And so when those folds happen, we lose access to our ability to actually to process depending on where those folds are. So I just want to say that you know, staying constantly active is wonderful, because that keeps the blood oxygenated so that when it goes to the brain, the brain says, hey, we’ve got oxygen, we can keep our brain cells going. So that’s a good thing. What’s interesting, though, is that we also need to keep hydrated, get lots of sleep, all of those things as well. So that can get complicated. The struggles that we have are very real, but it’s not their fault.

12:06

And what we have to do is try to adjust, and to have patience, and to come from a place of caring, and loving, and compassion. So that means that you have to change your mindset. Because when you normally interact with a spouse or a parent, you’ve had decades of adult to adult communication.

One of the most painful things I’ve heard is when a spouse, a woman was talking about her husband. And she said, Well, I don’t know what to do with him. I’ve shown him a photo album. And I showed him a book from him about the work he used to do. So you know, he’s very smart. And people tend to equate intelligence with capability. And that somehow, you’ve lost your intelligence. I want to reassure you, when thinking about mindset to remember that that person is still in that body.

The problem is, is that there’s this gooey, sticky plaque stuff between who they are and who you know them to be and who you expect them to be, frankly. And so unfortunately, they can’t get through that plaque. And you can’t get through it either. So because we are the ones that have cognitive capability, it’s up to us to change how we interact with them. And so it’s that mindset change.

A lot of times we feel this sense of loss, that the memories that we had with this person are gone. They don’t remember them. Even the things that you put in their room. Yeah, we do that for us. I don’t know if you realize that but when we put comfortable things like oh, this is your favorite blanket. For Mom, I would bring in little stuffed doggies or something like that. And it was good for her for tactile reasons, but she didn’t know that that dog from any other dog or anything else.

And so, again, we bring those things in in order to make it feel homey, but we can’t expect them to remember that that particular statue or that particular sweater was one that you gave him on a particular holiday or that it was extra special for some reason or that you made the scarf yourself.

So that loss while that person still in front of you physically is the hardest thing to cope with. Because you’re sitting there saying “but, we did this together. We’ve had children, we’ve gone on vacation, we’ve done this, we’ve done that, and a lot of times we’ll use the words “do you remember?” And they don’t.

And by the way, that’s a really quick way to get them upset. Because especially at the earliest stages, so early to early mid stage, they’ll get very angry with you. If you say, “do you remember this,” or you tell them, oh, we have a doctor’s appointment at two o’clock, put your shoes on. And then they come back and they don’t have their shoes on. And you say, “I’ve told you three times,” well, you’re going to get backlash, because they’re still cognizant enough to know that they have a problem. And it’s really scary.

The early to earliest mid stage is where they are scared to death. And they’re trying to hide their embarrassment so they don’t socialize as much. They won’t join you to go do something as they might have in the past. The good news is, is that by the time they moved to mid stage, you can usually before they get to late stage, you can usually you know, get them out and do something with them. It’s just that that’s for your memories, not theirs.

And what you’re doing at that point in time is what I call creating moments of joy. And that’s where it’s about you, creating happiness for yourself, and creating a happy emotion for them, because they remember emotions. So all the time that you’re with them, you want to be happy and upbeat. And that means that the language that you use has to be and the tone that you use has to be upbeat.

You can’t say “I’ve told you that three times,” or “do you remember,” or any of those other phrases that trigger issues with them, as far as that pointing out that they are no longer for lack of a better word, performing to our expectations, which is why I say you need to manage your expectations. And that means that you need to go in there and just say, hey, it’s a new day, who knows what we’re going to run into, I’ve got a plan to you know, go and activity time to do an activity with them. It might be painting a birdhouse, whatever it is, it may just be snack time.

I used to bring my mom Dunkin Donuts, coffee, because that was something that we used to do. And I know that she likes it. So I would bring coffee, and then we’d have our cupcake. And we just sit there we obviously wouldn’t talk. But we would observe or there would be music or we would watch the people walking around. And so even sometimes when I would say something it registered with her, I could tell by her reaction, but she couldn’t respond.

I always knew when I walked in there that you know not to hope for much as far as response went, but I really was wanting to make it happy and make it enjoyable. So we have to step back as family members and realize, wow, okay, so life is very different. Now this person that I used to share memories with no longer shares those memories, that’s a really hard thing to deal with.

And you’re reminded, especially, if your spouse or your parent is living with you, then you’re reminded of that every day, or if you visit more frequently, honestly, you know, I would visit twice a week. And because she didn’t know how often I was visiting or for how long I was visiting. So I would stay for an hour and a half or two hours twice a week. Because I get that question a lot. How often should I visit? So remember that you want to focus on moments of joy. Now, how do you speak differently?

19:00

Well, first of all, the thing you cannot do is say, first put on your shoes, and then we’re going to go to the bank. And then we’re going to go to the restaurant and get lunch and then afterwards we’re gonna go to the grocery store. If you’re lucky, they caught grocery store, or they may have caught at the earliest stages to put on their shoes. But they’re not going to remember that whole phrase.

And so often I would overhear family members while I was visiting mom, give these really long explanations of what they were doing and how they were doing it. And really, they were just talking to themselves. And it was because they didn’t know what to do during a visit. And they would say, Well, you know, my brother would call and he would say, I want to talk to mom on the phone and I said, All right, well, you’re going to do all the talking. Let’s just remember. And she’s going to listen. But you can’t talk for long, because she can’t remember any of the things that you’re saying. There’s no context.

So it is neither a conversation nor something that can last very long. We have to keep our sentences simple. And we can’t ramble on. So everything has to be at best, I would say an either or question. But I actually wouldn’t even suggest that. I would say, do you want to wear the sweater? I wouldn’t say do you want to wear the sweater or the jacket? I would have the sweater and the jacket in front of me. And I would put her hand on it and have her touch it and say, do you want to wear the sweater. And if she wouldn’t, she would typically just let go of it if she would didn’t want something. And then I’d say you know, let’s put on your jacket. Because it was cold outside. And or I would grab a blanket.

There’s things that you have to keep in mind that the conversation that you’re having with them, or the how you’re speaking with them has to be very simplified, and give no more than two choices. And if you do, visuals are so much better than speaking, because and I’ll talk a bit about this in a second about how we learn and how we process information. And so it’s important to reinforce in multiple ways what you’re trying to communicate.

Now I did have in the support group I was leading, I asked a woman who had dementia early stage, so she was able to communicate, but she couldn’t had no short term memory. And so, something had happened earlier in the day and she remembered it. I said, Well, do you have one of these? and her husband was sitting next to her and he answered for her. And I said why? I’m asking her the question for a reason. I want her to think I’m going to give her 20 to 30 seconds to think. And then I’m going to see how she does and maybe help her with it.  Do you remember if it was this or was it that and so one of her challenges was that he was sharp as a tack. And so he would fill in all of her sentences before she even got them out.

Well, you’re actually creating some damage there because you’re not allowing them to even try to communicate. So we have to ratchet back our 120 mile an hour lives, you know, where we’re multitasking and doing all sorts of things all at once and, and our conversations are like this, and we’ve got our phone and our computer and you know, God knows what other devices on iPad in front of us and we’re trying to do all this stuff. And we’re talking fast and we’re texting and that world is that hurricane that we bring to them with we are visiting them in the care community or if we’re just visiting them, you know, wherever they are. But it’s it’s too much for us to stop. And one thing that I mentioned at the presentation last night was that they bring a whole new meaning to living in the moment.

23:33

They literally are in that second. So if you say something or do something, they’re not going to remember it, the only thing they remember is the emotion that goes with it. So if you got angry or were frustrated with your job, and you went in to visit your loved one, and you’re angry and say I can’t believe that my boss did this and he’s such a jerk. Well what they’re going to remember is how angry and frustrated you were. And the worst possible opportunity would be if they think it’s their fault.

Leave your world behind when you go to visit or whenever you’re talking with them. Just stop. You know what? It’s really good for us to do that. For us, our hearts our minds to just stop for a while. That used to be something I never appreciated when I would visit my mom because I’d be so wrapped up in the emotions and you know was mom’s pillow in the right spot for her arm so she wouldn’t lean, did she have a baby doll you know, any of those things that you know come up in the day to day world of living in a community or a group home. And I didn’t realize till later that it was my world just stopped during those hour and a half to two hour visits, and it was good for me to do that, and to dedicate time to her and not be looking at my phone.

So give them time to respond. And we’re not talking five seconds, it’s 20 to 30. And then you guys probably already know this, but you are not going to win an argument. Because they are not going to process the information that you’re using, in order to make this more logical to you. So you, you can say, I told you that I told you that I told you, that’s not going to do any good. But it will frustrate both of you an incredible amount. So what’s the point? You know, and so in the book I talk about, do you want to be happy? Or do you want to be right?

My next most frequent phrase is “let it go.†Because we get wrapped up in “Well, this isn’t right, and that’s not right. Those aren’t her pants.†And the most important thing about your loved one is are they safe? Are they clean? are they eating, and are they around other people so that they get to see interactions.

My mom actually lost her ability to swallow, she regained it, she was on hospice four times, and she came out of it three. And so she, she was eating pureed food. And then we started stepping her up a little bit to, to chunkier foods, until she could eat green beans and french fries and that kind of thing. And it was just interesting to watch that evolution and the foods that they used to, like they don’t like anymore, or they may like some of them, but not all of them.

Our worlds and how we view things are very, very rigid. You know, this person likes green beans and steak, and that person likes carrots and chicken. Well, that goes out the window. Again, another thing that we have to do to adjust when we communicate, “but you love this!” Oh, not anymore. So we have to remember that they are a whole new person. They’re a clean slate and so that’s a really important thing as you’re communicating with them to remember. So I imagine and you guys chat, you go ahead and pop into the text. How many of you get frustrated when talking with your loved one? Whether it’s a spouse or a parent. And Barbara? Well, while you guys are filling in there, Barbara asked, “How do you know what stage they’re in:” So that sounds like your loved one hasn’t been diagnosed.

27:49

But in reality, it’s a progressive disease. So if they’re able to remember it, and I actually document this in my book, “It’s Not That Simple: Helping Families Navigate the Alzheimer’s Journey.”  It’s on Amazon right now. I’m getting ready to release it to other outlets. But that probably won’t happen this week. It will probably happen next month. And so we start out with early stages, which is short term memory loss. That’s the biggest one, then task processing.

So if I knew how to knit, and I used to be really quick at it, and I can knock out a scarf during a couple of TV shows. And now I struggle. It could be that I don’t remember knit one, purl two, you know, whatever that sequence is. That’s all I remember from knitting from so many years ago so sorry if anybody here is a knitter.

You want to look at how quickly they’re retaining information or you know, responding to you. If the brain starts to slow down, that’s usually an indication when you get into motor skills. So like my mom not being able to swallow, and she went moved into a wheelchair after using a wheelie Walker. Her brain would not tell her legs what to do. And so she would collapse. We would technically call that a fall, but literally her legs would just give way, It was like her brain said “what are those things down there?” And “what are we supposed to do with them” so she wouldn’t, you know, she would just collapse. And so those are what  mid stages to late stages are like when they really don’t recognize you anymore or they don’t recognize people that they don’t see very frequently anymore.

They can also go non vocal. Incontinence is a given. So they can no longer toilet themselves, they can’t shower themselves. They, as opposed to say, early stages when they’re fighting the shower, it’s like I don’t need a shower.

Well, that’s another thing about communicating is that we have these fixed viewpoints on how often somebody should shower. Twice a week plenty for them. I mean, unless they’re out working in the hot weather, which they probably wouldn’t be, then they really don’t need to have a shower that often. Twice a week is fine.

And if they’re fighting the shower, then just you know, help them with a wet washcloth, clean all the important parts. And for women in particular, if you make the shower, a pleasant place, you know, maybe get a, you know, one of those scent plugin things to make it smell nice in there, change the lighting. So it’s bright enough. But it’s a warm light, not a fluorescent type bright light. Make sure that there’s always plenty of light in the bathroom, get some comfy slippers or some comfy row comfy robe, comfy towels, nice thick towels, make it a luxury spa experience to take a shower, make it easier on them, and don’t fight them on it.

So that’s the real high level, how do you know it’s early, mid or late stages, there’s in theory, depending on what you read, there’s seven stages. But in all honesty, early, mid and late is what we usually simplify it to because of the the nuances for every person who has Alzheimer’s in particular, it’s going to be different enough that you’re going to say is that early or is that mid? How important is it for you to label that.

The most important thing is, is that from diagnosis, pointing to the Alzheimer’s Association, they have for an average of four to eight years of living with this disease before they pass. My mom’s heart and everything was fine. She lived eight years after diagnosis.

So you have to be ready financially, personally, emotionally, mentally, health wise. You have to be prepared for an eight year journey. And so, so many families get all worked up at a transition point where you have to move your loved one into a care community. And it’s something that I highly advise that you do. And the reason why I suggest that is that you are not trained to be a caregiver of someone with dementia.

32:50

Even if you’ve got trained, it’s a full time job. So for people who are working, what are you going to do for income? And then on top of that, is the number one thing we learned from COVID is how important socialization and stimulation are.

And that’s why a care community is so important or group home and finding out what those activities are, what are you doing to help somebody in observing how other people act. So one of the things is eating. If I’m just sitting there with my mom, and I’m eating, she’s not necessarily going to follow what I’m doing. But if she looks around the table and sees everybody else is eating, she’s going to think “I guess we’re eating now.” So that’s normal.

Then there are different activities that are stimulating, but simple, easy enough for them to perform so they can have success. Those are all things that we’re not trained to do, and that most of us don’t do. Sitting in front of TV is the worst thing you can possibly do with someone with dementia. So it was good to see that I think it was the husband that was walking around and active. You just have to be careful because they can be a wander risk and they won’t be able to find their way back to you.

Another thing when talking and communicating is that you don’t want to ignore your loved one. Don’t talk over them. So if they’re in a wheelchair or they’re sitting down, and you’re talking to another family member, they’re still in the room.

I had someone tell a story of of taking their mom to get her dental work done. And the dentist only talked to the daughter. He didn’t even make eye contact with the patient. And so she got really upset, the loved one did. And she said “hello, hello. I’m here.” And shame on the doctor. Shame on the dentist for doing that. You can talk to two people at the same time. You make eye contact. You switch back and forth.

So never have a conversation with your family without being at the same level as your loved one is, and including them. You don’t have to ask them any questions. You don’t have to expect them to join. But you should make eye contact with them just as you would if they did have something to contribute.

35:16

So with mid to late stage dimension, and particularly with Alzheimer’s, you’re going to want to be at eye level. So you’re looking into their eyes, and then introduce yourself at every visit. So I would always say “Hi, Mom, it’s Pam.” And, you know, that worked out well.

Now I had talked about a little bit earlier, the many different ways of trying to communicate with them. And I mentioned with the sweater and the jacket, that I would put them in front of her. They’re looking for visual cues on your face. And they’re looking for tactile stimulation. And there’s four ways that we learn and communicate visual auditory, kinesthetic, which is like if you’re writing something down, and then reading and writing.

And so for me, I’m a very, if I read something, I will remember it. So I read things out loud, if I want to remember them. But visual is more about well, I see what you mean. So if somebody were to say something, does it take Cheryl and I were going to have a conversation, and she said, You know, I walked down the hall and I saw these beautiful flowers. And as a visual person, I would say, Oh my gosh, you know, I see what you mean those, those are just beautiful. Whereas somebody else might say, Oh, I hear what you’re saying, or are you listening so they use words that have to do audit with auditory or oral capability. And then read write is kind of a combination, and then kinesthetic? You know, let me write it down. Let me show you something. And then basically, it’s the more the merrier in order to see what’s resonating that day.

So if you have someone in early stage, where they can still read and write, it’s important to have them so let’s say you say “okay, we have a doctor’s appointment tomorrow at two o’clock.” That was the audible. Next is “would you please write that down?” and write down “doctor” so they write “doctor on Friday at 10am.” Okay, now, “would you read that back to me?” And they’ll say, “doctor’s appointment 10am. Friday.” Why are you making me do this? It’s like, “Alright, we’re both doing it.”

Because, and that’s always really important, if you ask them to do something for you, they are much more likely to do it than if you tell them what to do. Put on your jacket. “Here. I’m putting my shoes on. Why don’t you put your shoes on too?” See the difference? We get into being extremely bossy with people with dementia.

And that woman I mentioned earlier with the photos and the books and him being a microbiologist. She could have her tone of voice was, “Oh, honey, would you like to look at this picture these photos? Remember these people?”  I said, “Did you use that tone of voice?” And she said, “Well, yes.” And I said, “Why? he’s not. He’s not three years old. You don’t need to be singsongy.” No honey, or love, or sweetie. I had a waitress last night that called us all honey or love  at the table, probably at least 20 times to each of us. So annoying, and demeaning, and inappropriate. I have a bunch of other adjectives I could use but we’ll stop.

38:45

They’re adults. They deserve dignity and respect. And at any point in time when you get so frustrated that you can’t give them that, walk away. I had a daughter talking to me yesterday, who said mom keeps saying the same thing over and over go. I know, it was that she wouldn’t use her walker. And I said, I understand. But why are you calling it a walker? She said, Well, yeah, that’s what it is. And I said, My dad used to call it a wagon, because it had wheels and it had a basket with the seat cover. And I said, “so we call it a wagon” and mom would use it if it was a wagon, and then he used the wagon. So they had two wagons, and they would go down the hallway a wagon next a wagon and she was okay with that. So it’s about being creative.

Consider this a challenge to your creativity skills to come up with different ways to use different words, different ways of getting them to do things that you need them to do. It was a safety hazard that she wouldn’t use her walker. So I say call it the wagon. And then the other thing that you can do is to say “Mom, I really need you to bring the wagon because I want to buy some stuff” and I don’t care what you buy paper, buy toilet paper, buy Kleenex, whatever it is, but it’s got to fit in that wagon, because that’s what she’s bringing the wagon for, is for you to put stuff in that basket.

So she said, “well, I just get so frustrated.” And so I understand that it’s not just that you have to be creative, you have to think differently. So that’s part of what I do with people. I help them with all those different thought processes, different words, to use different techniques. And I believe Cheryl does that same thing for family members.

Again, avoid being frustrated. Show, don’t tell, because telling makes them resistant, they feel like, “okay, you’re telling me what to do. I’m an adult.” They’re still in there. Remember, there’s still, at the core of them is that person that you know and love. And you have to give that that person that entity, respect and dignity.

When in doubt, act it out. So I used to put my head on my hands, when mom’s doctor would say, well, Loretta, you need to lay down, I would do the Now I Lay Me Down to Sleep thing where you turn your head and you put your hands underneath like a pillow. And then she would remember that, you know, somewhere in there that triggered a memory of that means lay down.

If they need help, let them try first, let them try to respond, let them try to do something, if it’s looking catastrophic, you can say, “I’m going to try it. Can I try that?” As opposed to saying, “Let me do that for you.”  Alright, that’s what you would say to a three year old. So pretty much anything you would say to a child, do not say to your loved one. Because then they can pick up on that. They can pick up on that tone. And it’s demeaning. You know, they’ve lived an entire life. They deserve to be treated as adults.

So if it’s complicated, you know, you can say, “Can we try it this way? Or what about that, or boy, that looks confusing, you know, can I try?” So make it about you, not them. And please understand that they have good days and bad days, just like the rest of us. Unfortunately, their good days and bad days could involve getting upset, or sleeping all day right through your visit. So it’s just the nature of the beast, and we have to accept that things will vary on each visit. Let’s see the chat. Tamara says “a great question, Debbie.” So let me stop for a minute and scroll up here to see what Debbie asked.

42:46

I’m appreciating the present moment that we get a chance to love each other again, where he feels remembered, he feels respected and valued. Exactly. The heart connection is so incredibly powerful. And we laugh Yes, if you can laugh, that’s the best thing. Debbie said. My father has memory care at Inspira, his dementia has been advancing. For my siblings, the conversation is mostly one sided. Yep. Do you have any suggestions on how to handle a visit from multiple people as a celebration, versus one to one so that he stays as comfortable as possible?

Okay. So in the book, when I talk about visiting, I say never have more than two people at a time visiting. And the reason why I say that, and Cheryl, feel free to weigh in. They’re overwhelmed. The more people it’s like look at all these strangers, and they’re all here and I don’t know what they’re doing. Or if they have some cognitive ability. They’re sitting there going thinking “okay, that guy looks familiar. And that woman looks familiar and I think that’s so and so and I think that’s so and so.” When the brain gets puzzled, it gets consumed and so he or she will in your case, your dad will shut down. The brain gets tired of trying to figure out who are all these people so he’ll shut down.

So I would not celebrate. Celebrations are something that we do and we have celebrations based on our memories or when we’re told there’s a holiday. He’s not going to know it’s a celebration. He’s not not going to know that it’s Thanksgiving or Christmas or his birthday. But he might like the cake. And every person I know with dementia loves sugar. It’s so bad for you but at that stage you know as they get older, I’m I’m of the belief at least that they can have whatever they want.

But that being said, it winds them up just like it does everyone else and if they have any sugar issues that’s not good for them either. Because when I get back to their care community, they’re going to have issues. So if you’re wanting multiple people, so you shouldn’t bring grandchildren and your siblings and have everybody show up in a pile of five or six people. That’s overwhelming for the entire community, frankly, because they’re like, “why are all these strangers walking around?”

So two people is ideal. And then you mentioned one on one, honestly, keeping the tone, that’s why I would visit during activities or at snack. There’s always something going on. And that made more sense to mom that I was there and we were engaged, and we had something to do. We would also walk around and sing Christmas carols during Christmas time. She did sing, but the she’d sing off key, but she didn’t have the words to anything. So it was probably painful on a lot of other people to hear us but, but we had fun. And that’s what it’s all about is what makes him

45:58 Cheryl

happy. {Cheryl} Can I just say something? I know, the holiday season is coming up. And so I will get a lot of questions about you know, how to manage the holidays. And you know, several of our residents who are much how are higher functioning, they’re out of the families are going to want to bring them to home or okay. othering. Okay.

Oh, and I completely agree, you know, it’s very overwhelming. But for those that that definitely want to do that I always be prepared, that your loved one is probably going to want to leave soon after they get there. Just overwhelming. And sure that you have somebody that can transport them back to the community, or have a quiet place a room where you can bring them to and just kind of talk one on one calmly, yes. just helping them to be aware of of how overwhelming like you said that it could be when you have a lot of different people. And being prepared for that as a way out and not ruining a whole lot of times people want to bring their loved ones to a wedding. And and then it could ruin it for everybody. If you have to stop in the middle of activities and then take that person out. Or they get overwhelmed and may have somebody might act out to right, exactly, yeah, no, and that’s not good for the holidays.

47:23 Pam

You bring up a good point Cheryl. So I do talk about this in the book. I’ve walked through the steps. If you’re bringing your loved one home, here’s what you need to do. And I actually I might even have a slide in this deck. Let me take a quick look here. Oh, wait, no, see, that was a great lead in preparing for an outing.

First check with the care community. Check in and find out from Cheryl, you know, what is it they like to eat, you know what, what things like if for apple slices were mentioned in the chat, you know, find something that helps them feel comfortable and helps them feel safe, because that’s ultimately where they’re going to act out.

Then assign someone who can be the full time companion, because you don’t want them sitting there. If they’ve somehow needed a change of of underwear, you want that person to get on it, you don’t want them walking over and being in the middle of a conversation and leaving them alone. That person somebody over the age of 18, preferably, that’s going to watch over them and stay with them. You can hire a caregiver to do that as well.

They’re going to need some help. And if they know and have one person do it, as opposed to well, Susie’s got, you know, first hour and Jane’s got the second hour and Bob’s got the full third hour, that’s too confusing, they don’t know who to look to.

So consistency is really important. And then finding a quiet place Cheryl, you mentioned this one quiet place for there for them to sit and watch. And, to keep, you know, in a quiet place, meaning that if there’s children bouncing around and screaming or yelling and stuff, then then or having a great time just laughing and everybody’s talking, get them pulled back a little bit. So they can both observe and participate. But if they’re in the middle of it, they’ll go crazy, especially if they’re in a wheelchair and they can’t get out.

And frankly now they’re in a strange house because even though they may have been very familiar with your house in the past, they might not be familiar with it. They may not know where the toilet is. So even if they’re ambulatory and they don’t know where the toilet is, things go south really quickly, because they’re going to keep opening closet doors until they find toilet room and they might use a closet door. And what’s in the closet.

So we have to pay attention. And that means to manage your expectations, take them down a notch to 10. And say it’d be wonderful to have dad here for an hour and expect that that’s the longest it’s going to be and plan for that. If you get more, great. Just know that this is a tiring experience for him, or her, depending on who you’re bringing home. And then prepare your family to say, okay, grandpa’s coming, or dad’s coming. And we all just need to be chill and enjoy the time together and make some happy memories. But realize that, you know, he probably won’t be there for as long as we would like or as normal, but

50:50

we’re here, celebrations, and any sort of holiday is about people being together and building their own memories. So he’s there to just enjoy the emotions. So everybody needs to be happy. They also need to prepare, if you have any hellion children, as I affectionately call them, the ones that are unruly, it’s quite possible that your loved one will say “that kids a mess,” or “that kid totally misbehaving” or, potentially, “I don’t know who you are.”

And that might be just that day, it might be the overwhelm, we don’t know what really triggers those type of things. But bear in mind that anything is possible. So again, keep your expectations checked, everybody’s prepared, we don’t know what’s going to happen, but he’s going to be there. So give him big hugs, and tell him you love him a million times and hold his hand while he’s sitting there.

And you know, those are the things that he’ll keep, and that you’ll keep, too. Evaluate the environment, too, for safety and access issues. Again, put up a picture of the toilet, or a toilet, on the door that has the toilet in it. Do some visuals, if you think he’s walking around at all, do some visuals about where stuff is, in case he’s looking for something.

But basically, somebody should be with your loved one at all times to monitor what’s going on there. That was a good question. And then basically, I talked about how to greet and leave. But this is something that’s always hard, I would give mom a big hug and say “I have to take the dogs out, I’ll be back.” Or “I’ll see you later.”

So if any of you, depending on where you’re at with functioning and capability, are struggling with greeting or saying goodbye. Because sometimes they want to follow you out, “I want to go with you.” And it’s you know, that’s why you have to say, “well, I’ve got to do something, I’m not going home right now. So you stay here eat dinner.” I would always leave just before a meal so that she’d be busy. And so that wouldn’t be appropriate for her to leave dinner in order to come with me. So it works out better that way. Let me know if you have any questions there.

Then, make sure you guys take care of yourselves. I mean, ultimately they’re being taken care of, hopefully by a community or a home where people are educated and certified and understand dementia. You need to get help. You can’t do it alone.

The statistics show dementia caregivers have an increase by 20 to 30% over non caregivers of the top five chronic conditions – cancer, high cholesterol, heart disease and high blood pressure, obesity and diabetes. So your loved one would never want to be the reason why you get sick.

And so we need to take good care of ourselves and banish the “I’ve got this” behaviors and attitude and then instead say, “Help. What do I do? Who do I talk with? How do I make this a better experience for all of us?” So this is me. If you email me and you know set up a time to talk.

I do offer a free 30 minute console. And you can just email me at [email protected]. And I actually just recently changed my website. I knew there was a reason why I was still on PowerPoint instead of slide mode in the new website where you can do that is AlzheimersFamilyConsulting.com. I figured I’d make website match to the company.

So that’s where you would go to get more tips. I have a bunch of information there. And I’m going to move that little Facebook logo down here and I have a lot of videos training you videos about the topics, various topics that we cover, just search for Alzheimer’s family consulting on YouTube. So let’s take a look through the chat, shall we? And see Yeah. Add your questions there. And let’s see if there’s anything that we missed. Did you see anything Cheryl?

55:18

And now I think we covered what was in the chat, but I was wondering if maybe we can unmute everybody and see what questions you know, they’d like to ask. Okay.

55:31

I had typed a question. My name is Mary. And I thank you so much for this. You hit so many important points. My husband is completely obstructive, resistant to brushing his teeth.

55:46

Hmm. popular one.

55:49

Mm hmm. And I don’t think he’s brushed his teeth in a year. And he got he went into high anxiety when they had the mobile dentist come and he saw all the instruments. And so then he went into hysterics. And so any, any ideas?

56:10

So what have you tried?

56:14

Well, they said that what they you know, they gave him some Xanax, they, they gave him some other calmatives. And, I mean, I was not there at the time, because it was during COVID. And I wasn’t allowed in. It just we’ve tried several times. And then the previous nursing director, Cody, he said that, in his opinion, they would have to just completely knock him out in order to be able to do this. He’s the one that’s very active. Okay. Yeah, he’s extremely active. He’s on the go.

56:52

What’s his cognitive ability at this point? Like, can you have a conversation with them? Or does he just not have short term memory? How does that work? Well,

57:01

he’s pretty dysfunctional, I would, on a one to 10 he’s probably a 6.5. You know, Cheryl, you can, you can add in anything you have to say, he can’t dress or shower. He’s incontinent.

57:19 Cheryl

He’s also very, and I always say this, he’s, he’s always in, in his head, you know, there’s a lot of activity going on in his head that doesn’t relate at all to what’s going on around him. But I would say, you know, as far as his brushing teeth, you know, obviously it depends on what stage they’re at.

But it’s, you know, it’s helpful to just put the toothbrush in their hand, put the toothpaste on, and then do kind of a hand under hand where you’re moving it now sometimes your loved one won’t even allow that and then and then I think that’s why we suggested having the mobile dentistry come in so that they could work on him and so if when that doesn’t work, I know there’s you know, it becomes a real issue and then there’s a point where you know, where when you can’t brush his teeth, you know. What I think the main, you know, the main thing with your loved one is to get him at a good time, at a time when he’s happy. And he’s allowing people to assist him to do it. At that point, you can’t say every morning at you know, eight o’clock, we’re going to brush. That is just not going to work.

58:46

Definitely. He was very cooperative. When I saw him on Saturday, I cut his hair, really fussed over him. And so I’m thinking, I’m going to start bringing a toothbrush and paste and just see, you know, our concern was, is he going to swallow it? Is he going to spit it out? So I’ll bring some non fluoride toothpaste and just see how far I get with it. And

59:06 Pam

Here’s another idea. To me, that sounds like we’re telling him what to do, not showing him what to do. So bring two toothbrushes and you brush your teeth and his teeth maybe. The other thing is, is that to change the shape of the toothbrush, so there’s a finger brush that you can, I hate to say it this way, it’s what puppies use,

59:33

right? Exactly, right?

59:37

So if you put that on his finger and you put one on your finger, and you do this, and then he may mimic you. So those are it’s all about examples. If there’s other residents that brush their teeth. Maybe it’s a something everybody could do as an activity.

1:00:01

“All right everybody we’re going to brush our teeth. Alright, everybody grab your toothbrush!” and make you know I mean you could literally make it a bigger deal if you have multiple people that you know can are higher functioning.

But I would go with you bring in your own toothbrush, and you have his cup and his toothbrush and you have your cup and your toothbrush and you put a little bit of toothpaste just like he would you know, if you were helping someone else would didn’t have issues. And you both brush your teeth, and then I would try the finger brush. And get one for you. And same thing. You’re showing what needs to be done because telling doesn’t work. Telling doesn’t work.

And honestly, I hate dentists. I would be exactly the way I would behave the exact same way he does, because it’s like, oh my god, look at all those sharp pointy things. And now you’re going to stick those in my mouth! Shame on the mobile dentistry that they I mean, knowing that he had anxiety, put all that stuff out there. But you know, you live and you learn. That’s something we have to realize. That’s why I say let it go. It’s going to happen. Not everybody is trained to the level and the experience that we have. And so, you know, it’s like, “okay, that didn’t work. Let’s try something.” So those have

1:01:18

been like, ideas, and I’m going to try different, different flavors like orange or orange, and have fun with it. Because that’s what we do best is. We laugh together. Yeah. And he adores that. And he was super cooperative with me. I think, more than he ever has been last week. So yeah.

1:01:44

Okay. All right. So he’s he’s had a chance to adjust. So that’s not the thing. And so usually, as they decline, cognitively, they become easier to work with. But not everybody follows that rule. Sometimes it goes the other way. Oh, so yeah, I would try those things. You know, remember it show, don’t tell.

1:02:06

Absolutely. And approaches everything a friendly, light hearted approach rather than a forceful You know, we’ve all learned that. So thank you. Yeah.

1:02:16

You have to sing the song with him. This is the way we brush your teeth, brush your teeth. In the morning, door, do it?

1:02:25

Oh, yeah, you have to be really careful. I mean, I don’t know where he’s at. I know that the educated man I spoke about earlier would throw the toothbrush and the toothpaste at you for singing to him like a child. So everybody’s unique. So depending on where he’s at, I would, you know, you can use that, but we just have to be careful because like, for instance, you doting on him.

You know, start off with whatever you did then, it worked. However you introduced yourself that day and your mood worked well together. So it gives you a chance to mimic that. And then this time,say “We cut your hair last time. So this time, I need to brush my teeth. Will you do it with me?” And so it’s a different wording than you would typically say “let’s brush our teeth.” But what if he doesn’t want to, “I don’t need to brush my teeth.” But if you say “I’m going to brush my teeth. You know, let’s do it together” you know making an activity together, then that’s going to be more positive.

1:03:26

Yes, yes.

1:03:27

Thank you. You’re very welcome. Any other questions? Tamara mentioned a Waterpik. Oh, Waterpik might scare the heck out of him, Tamara!

1:03:39

I wouldn’t do it at home. So you know, what about dental care and hygiene?

1:03:44

It would be all over anyway. Water was all over. Yeah, we’d have to be outside in the courtyard, maybe. Maybe,

1:03:58

whatever works. And then the important thing is to, to remember, I mean, you’re only going to get this to work once a week, you know, but at least it’s a start. And then it might become more familiar to him. He won’t be, at least he won’t look at something like a toothbrush with apprehension. So what an interesting behavioral thing though, what you know, as far as hang ups go with dementia and Alzheimer’s. Yeah. And it could be the case for six months and then it could go away or it could be an issue for a year but then it goes away and they pick on something else. So write me an email and let me know how it went. Thank you. Well,

1:04:40

my husband would not brush his teeth before he moved in and I know they had trouble getting him to brush his teeth. But with the mobile dentistry, the doctor prescribed a sedative. It doesn’t knock him out. It just makes him cooperative. And he was extremely unclear. operative before what i mean i don’t know exactly what the sedative is, but Cheryl would be able to tell you or hope to tell you because they keep it there for when the dentist comes and I have them come four times a year and I don’t know if the caregivers can get him to brush his teeth or not now. I haven’t asked lately. I just know that the dentist comes in and says everything’s okay or he had to have two root canals but those were probably Those are probably coming on before he moved in.

1:05:37

I can’t imagine Rick going through a root canal my husband but I think you know the approach that Pam was saying like get him get him acquainted and friendly again with just an easy you know in his mouth a little bit you know, and maybe we can progress from there but thank you now and the answer to

1:05:57

your question about Mary about you know what kind of set it up I think it’s very similar if not the same as to you know what what he’s you know, using at various different times when we need to kind of help understand

1:06:17

Remember you get to brush your teeth too at the same time. You’re going to very clean teeth!

1:06:26

right i think you know, I think that Pam what you said about you know about doing it over and over and kind of showing them how to how to do that and doing it with them is really important and the consistency is important too because it’s building a habit you know.

So like she said, Well, if you know they see it, they’re not going to hesitate to do it if it was a pleasant experience. So but but creating a habit that’s familiar is something that even if they don’t remember it, they will remember the feeling that they got you know, and if somebody was trying to force them to brush their teeth, that feeling will stick with them, but if you did it in a really pleasant way, that feeling is also going to stick with them and they’d be more willing to do it so

1:07:11

I’ll bring you a toothbrush, too! Okay, let’s do it!

1:07:19

Any other questions? I put the link to the book in the chat again because I put it at the very top and of course we piled on top and chat so if you have any questions again, I’m at [email protected] Just email me, and I will do what I can to help you and then we can maybe we can set up a time to talk one on one as I said, the first 30 minutes are complimentary. Usually we get at least one big question in that period of time.