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Welcome to Healthcare Redefined: Advocating for Aging Adults and Their Families, where we empower families to navigate the complexities of aging and healthcare. Presented by Your Nurse Advocate Consulting, we share real stories, expert advice, and practical tools to help you and your loved ones confidently navigate aging with dignity.
We explore topics like creating collaborative care plans, demystifying Medicare, handling healthcare crises, and preparing for the future. Join us as we transform uncertainty into understanding.
Pam: [00:00:00] If you're caring for someone with dementia, you know, you may feel like the rules change every day. One day your loved one is calm and the next day they're upset, confused, or refusing help. So today, we're sharing real world tips that you can use right away so you feel more steady, more prepared, and less alone.
Linda: [00:00:19] Well, hello and welcome to Healthcare Redefined advocating for Aging Adults and Their Families, the podcast where we tackle the real life challenges of caregiving, aging, and navigating the health care system. I'm Linda Kritikos.
Pam: [00:00:32] Hi, and I'm Pam Donewald. With over 80 years of combined experience as registered nurses and board certified patient advocates, we're here to help you feel confident, informed, and supported every step of the way. So this week we're talking about dementia tips and strategies for family caregivers, because we know how exhausting it can be when you're trying to keep someone safe, calm, and cared for while also managing your own life.
Linda: [00:00:57] Today, we're joined by Sheri Fairman, master of social Work, who is the owner of Dementia Care Solutions and current of care. Welcome, Sheri. Thank you for joining us today.
Sheri: [00:01:09] Thank you so much for having me.
Pam: [00:01:12] You know, Sheri, we're so glad that you're here. Your work supports families on a day to day reality of dementia care. And we know our listeners are going to walk away with some practical ideas that they can use. So before we begin, a quick reminder, today's conversation is for educational purposes only. It's not medical advice. Every situation is different. So please reach out to your health care team or a qualified professional for guidance that fits your family.
Pam: [00:01:41] Sheri, welcome to Healthcare Redefined. If you could just take a moment to introduce your, you know, talk about your background, how you got into caring for dementia and really what made you choose dementia care as your focus.
Sheri: [00:01:56] Thank you. It's so good to see you guys. So I actually started as a care partner myself with my mom, and I think I can date it back to about when I was five years old. My mom was always somebody who was just not well. And I remember getting out of bed in the middle of the night and getting her some milk because she was she'd have ulcers. And I just basically spent my adult life making sure that all of her care needs were met. And so I date my care partner journey all the way back to then. Well, as an adult, she developed some other physical conditions and things like COPD, emphysema, ultimately lung cancer. And as she was dealing with some of these conditions that affected blood flow to her brain she started to develop vascular dementia. So I started in about 2010 working with the elderly and disabled population and caregivers. And about ten years ago, I started as a dementia care specialist with a local aging and disability resource center here in Wisconsin. And that is when my dementia focus really took off. And I actually learned a lot in caring for my mom with dementia, in supporting thousands of family care partners. And in 2022, I branched off and I started to support professionals in my own private practice.
Pam: [00:03:25] And Sheri, could you tell us a little bit about and I know you have some specialty training that tell us a little bit about how you prepared to become a dementia care specialist.
Sheri: [00:03:35] Oh, I love this question because some people think that you have to take a special type of certification or course or something to be able to call yourself a specialist. And one of the things I've learned in dementia care is that there are people who figured things out caring for their loved one who could do something like what I do when it comes to dementia care. That lived experience is so valuable. For me, I actually did a lot of research as I started to develop my private practice, and I looked at lots of different approaches to dementia care. And besides creating my own approach, the fish approach to dementia care, I already heard of this person. Her name is Tipa Snow, and I loved her approach. It's like she created the wheel when it came to dementia care. So I got certified with her in multiple different certifications, coach, consultant, trainer, and I just went all the way and I became a mentor on her team. So I actually am an independent contractor with Tipa, and I get to do some work with her separate from my company, but as an independent contractor. I also did some exploring into the Montessori Dementia Care professional, which is where we look at how the brain works and how we can use what we know about the brain and how it works in supporting people with dementia. The dice approach to dementia care is another certification that I hold, which is really kind of an assessment way of figuring out what people are telling us they need, and so that we can figure out how to meet their needs. Those are kind of the main dementia care specific certifications that I hold. But ongoing learning and learning from my families and professionals is like right up there with one of the priority ways to get yourself much more well educated.
Pam: [00:05:28] Thank you for sharing. Linda, do you have a question for Shari?
Linda: [00:05:32] First of all, Sheri, I want to thank you. You are a wealth of information and knowledge, and it is impressive. And working with Tipa has got to be an amazing experience. I've been to some of her conferences and lectures and she's just an amazing speaker. So I do have a question for you. What do family caregivers most misunderstand about dementia, especially in the early stages of it where it may not be pronounced or they may not even be diagnosed yet?
Sheri: [00:06:04] Great question. You know, a lot of times we look at early symptoms of dementia as somebody is overwhelmed or stressed out. They've got a lot on their plate and we excuse a lot of the symptoms away. We also excuse a lot of symptoms away as though it's typical aging. And there's a really big difference between typical aging and a brain disease. And I think people will often feel a little bit more comfortable thinking it's like a senior moment when really it can quite possibly be brain cell death. You know, changes in the brain are happening decades sometimes before we even see a symptom outward. And then when we don't recognize those outward symptoms until they become so much more than just a little light forgetfulness here and there. We've missed a lot of opportunities for support and intervention earlier on.
Linda: [00:07:04] So what do you wish families heard sooner before they hit this crisis point where something really bad is happening.
Sheri: [00:07:12] Oh my gosh. I think this is the biggest thing. Whenever people meet with me, the first thing they say is, I wish I would have known this stuff sooner. So first of all, including the person living with brain change in these conversations is so very important, especially early, early, early in the disease process. When we kind of just dismiss those symptoms as something else and doesn't, we don't take that opportunity to use these moments to really engage in in-depth conversation, then we start to have to guess what this person would want as the disease progresses, because we miss that opportunity. So the biggest thing is to talk about the planning. What do you want this to look like? You know, as this progresses, if my needs, if I'm a person living with brain change and my needs become where I need incontinence support, what do I want my family's role to be in that if I'm earlier in the disease process, I can share that, right? But if I'm later, we're going to guess. And a lot of times we might not guess quite right. So the big thing is planning for what we're going to do, how this journey is going to look right. It's a marathon. And the other one is communication strategies. Sometimes we don't know how to say what we need to say or what we should or shouldn't say. And that is a big one that families wish they knew earlier on how to navigate these conversations.
Pam: [00:08:43] Great point, Sheri. And I think back of one of Linda and I, I think our very first client. And to your point, she asked me if she hadn't been coming to church, and she asked me to come over and see her after church one Sunday. And I did, and she said, Pam, you might be wondering why I'm not going to church, but I heard she had Alzheimer's in her family. And she says, I'm to the point where I don't want to go to church because I'm afraid I'm going to forget the names of the people that I've known for years. Can you help me? And so, to make a long story short, to your point, she was able to say what she wanted. Her husband said, I want to keep her home no matter what. And so we were able to put that plan in place to support her and for her Alzheimer's, she went through that journey very quickly. From the time we got involved to the time she actually passed away was less than a year. So but again, to your point, we were best able to support her because she was able to share her wishes and her husband was able to share her wishes. So in moving on, Sheri, when a caregiver is overwhelmed, what are maybe the first 2 or 3 things you want them to focus on?
Sheri: [00:09:50] Oh my goodness. Well, feeling overwhelmed is kind of a given when it comes to dementia care. I mean, no matter how many tools you have in your tool belt, know how, no matter how many people you add to your team, it's going to feel overwhelming because the relationship is changing. And that's hard. It's your every step of the way you're filled with grief. So when you start to feel overwhelmed, you start. Here's one of the things that I say. Your level of frustration, your level of feeling overwhelmed, of anxiety and everything, the higher that level goes, that's in direct relationship with how much help you need. So when you feel like you need some help and they can be informal support, right? Friends, families, neighbors, church people who you don't pay, people who jump in and help out. That's often the first people we start. Well, sometimes it's just meaning it's not. Sometimes it's going to end up being more. And so when you've got the support and you're like, okay, I think I can do this. And then all of a sudden you start feeling overwhelmed again. And even though you've got some help, you're feeling overwhelmed. It's dementia. Dementia changes. It progresses. So does our team. We have to change. We have to progress. It just means it's time to add in more people. But keeping a pulse on how you're doing and relating that to how much help you need will be very helpful.
Pam: [00:11:17] Thank you for that. What does a good day look like in dementia care and how can families create more good days?
Sheri: [00:11:25] Oh my goodness, I love this question. Thank you so much because we like to just hyper focus on the hardship that comes with dementia care. But there's so much joy. Life goes on. You can get diagnosed with dementia and you can live one to 20 or 30 years. This is, as Tipa would say, a really long time to wait to die. So those of us with our healthy brains play a major role in helping people living with brain changes have a great quality of life. If I know how to communicate with my loved one, then we're going to have less distress. So rather than saying, you got to take your pills, did you do this? Did you do that? If I have a skill in my tool belt in how to communicate with people, there's going to be more peace. Then when we look at the dementia experience through the eyes of the person living with the brain changes, we can start to understand how doing things feel different now. So they might have really enjoyed going to the mall, but now they don't enjoy it so much. And so those of us with a healthy brain might need to make a shift into different activities during the day, because going to the mall where it's busy and loud and bright and a lot of people could be overwhelming for somebody, but they still like to get out and spend time. But maybe with less people in a different environment. It all goes back to those of us with healthy brains in their lives, willing to make adjustments, to be flexible, and to create a supportive environment with people who know how to support the person with the idea that they have the right to thrive, not just survive.
Pam: [00:13:14] Now, that's a great point. And just going back to that same story again, to kind of bring an example to the things that you're saying is this client of ours really liked ice cream, and there's a famous Pearl Street ice cream shop in La Crosse, and that was her favorite place to go. So we went through the line, her granddaughter and Grant, she was they were guardians of their grandchildren, they were only in their early 20s. So now on top of this, Grandma that's having Alzheimer's. Her caregivers, her main care support, were 20 something year olds. And they were both under 25. And so we went to the ice cream store. I went with them and we sat down and she got her sundae and everything. She said, I didn't get my nuts on Sunday. And the granddaughter immediately started saying, oh, that's okay grandma. You know, we'll get nuts next time. You know, we'll, and I could see her starting to ramp up and can see, you know, that she was starting to get upset. And I told the granddaughter, I said, just a minute. I went to the head of the line very quietly, explained what was going on. I said, I don't care what you charge me. Can I have a little cup of nuts? And she gave me a cup of nuts. We went, put the nuts on. Her mood changed immediately. She enjoyed her Sunday and we avoided what could have been an embarrassing situation in the ice cream. So again, just what you say, just very little practical things can help, you know, make a good day instead of a bad day.
Sheri: [00:14:38] That's the flexibility piece, right? Rather than, well, they didn't have it. So next time. Well, you know, in dementia care, now I call these moment bubbles. Right. We are in this moment bubble and in this moment bubble. I want the nuts on my sundae. And when we start talking about a different moment bubble where we'll put the nuts on, it doesn't work that way in dementia care. So we've got to get in the moment, bubble with them and be like, oh, right. If you wanted nuts on your sundae, you'd get them or you could choose to. Well, I'll wait, but for her, that's not the choice. So nice job getting the nuts. Quality of life, right? Nobody's hurt and she doesn't have to feel distressed.
Linda: [00:15:20] So in saying those things, what are some of the daily routines that can tend to reduce some agitation and confusion? Because that's something that is I see that a lot with some of the clients that, you know, I've worked with and when I've worked in other areas of my life that's this constant almost frustration with caregiving and getting, you know, all of a sudden there's this ramp up of agitation and confusion. So what are some of these routines that can reduce some of those things?
Sheri: [00:15:54] So routine is really important for most of us, to be honest. Most of us have a routine. We get up, we do, you know, things in a certain order throughout our lives. And when people start to experience dementia, they're not quite sure what the next thing and the routine is. And so this can be very helpful. So when we create a routine for them, but you know, the caveat here is that we need to be flexible with it because they might not want to go with what the typical routine is. And we have to ask ourselves, how important is it to make them do something that we would typically have a routine? The biggest part of the routine is trying to make sure that we go to bed about the same time. Trying to make sure that we get up at the same time as much as possible. Those types of circadian rhythm, I mean, we're talking about supporting people with dementia at the brain level that can actually help them to feel more successful. When we start to get frustrated at that person, because we want to push our routine that we would like to do. That's where we end up affecting the relationship. And the relationship is really the core to care. If we're affecting the relationship, if it feels like this at all, we've got to put ourselves in a check and say, ooh, who's the one who has the ability to change? Us. So what can I do differently to actually get the ultimate goal met without pushing it, without giving, feeling like we're pushing them?
Pam: [00:17:34] Those are really good points, because. we see a lot of that pushing a lot of times where people want them to do it because they're busy, they have other things they need to do. So they want this person up dressed, ready, or I need you to eat your breakfast now because I just made it doesn't matter whether they're hungry or not. So one other question in that component that I wanted to ask is, as safety, individuals when they start getting dementia patients, when they start getting agitated or confused, a lot of times their safety can be in jeopardy. So what small change can someone make to make a home safer right away to help with some of these things, until they're adjusted and until they get into these routines?
Sheri: [00:18:18] So, you know, safety is one of those words that we use. A lot of times. We use it like children, right? We want to keep people safe. We want to keep ourselves safe. But at the same time, we all make decisions all the time that aren't super safe decisions like we speed, we go fast through a yellow light sometimes to hopefully beat the red and we do risky stuff all the time. And what happens a lot in dementia care is we put in this safety element as like the primary thing. And what it comes across as is control. So control is my theme for 2027. So I can actually shift over to control talk in a little bit of a minute. But you're not wrong, right? Safety is really important. When we start to recognize early brain changes, we need to be able to say, you know, what is going to be too risky, that if something happens, it's going to impact quality of life. Here's an example. Somebody gives away $100,000. I might have had somebody who did that to a scammer, right? That is money they no longer have for their care needs. This is too much risk. Now, somebody may be going to cut themselves with a knife someday. So locking up all the knives is probably going to take away quality of life, because independence is something people really thrive on. And if we just think, well, they might, then we're going to take away too much independence and we're going to have a bubble wrapped bunch of people with no thriving at all. So yeah, great question. But the answer is going to be as individual as the person and always. I mean, I'm a huge fan of risk. People always know, like, you gotta weigh out, is this so risky that if something bad happens, they're going to completely destroy their quality of life? Or is it like, yeah, could be, something could happen? But if it does, we'll be okay. You know.
Pam: [00:20:29] I just another example with this same woman came to mind. I mean, she loved to, you know, part of her routine was washing dishes. You know, cleaning up the kitchen. That was her role. So we realized she started, she broke a glass one time. And so he says, okay, you know, and she did cut herself. So what we did is we replaced all the dishes with plastic ware and we just let her have at it. But now, you know, we took away some of that risk but didn't take her, didn't take away her desire to want to do dishes. So that was just a simple thing that we did.
Sheri: [00:21:04] I love that it's about how we can do things. Not if we can do things. It's about how we can do things. And this is what this is kind of what I do a lot with family caregivers who want to do things like travel or, or what have you. But they will say, well, I can't now. And I'm like, well, let's switch that away into how can I? I was in a nursing home and they had the activity where people were making soup. So they're cutting up all these vegetables, right? And they had like four ladies. This is a nursing home level of care for ladies sitting in a little half circle. And they're watching the activity of people cutting up the vegetables, the vegetables, right. Carrots and celery and onions. And I stood there and I said, I said, well, what would happen if you, you know, had the ladies cut up the vegetables? And they looked at each other and they're like, you can't give people with dementia knives. And I'm like, you shouldn't give some people with dementia knives, absolutely. Especially when they don't know what it is, you know, or they might have some distress where they feel like they have to protect themselves with it. But that's so rare. Why couldn't they? And they're like, all right, so they gave them each a knife and a cutting board and, and onion, carrot and celery. And these ladies who were sitting there just watching them get up and they start cutting. And this one lady says, you, my husband, could cut the onions so small. And this other lady says, how could you get your husband to cut up anything? And they're all engaged. And the staff are like, oh my gosh. This is an example of safety versus risk and quality of life. And yeah, maybe they don't want to use the vegetables for whatever reason. That's a whole other topic. But that sense of independence and autonomy and actually doing something. Us ladies, we don't sit around and watch other people work. I'm sorry. We just haven't done that our whole lives. So how can we make it feel like we're doing stuff?
Pam: [00:23:09] Those are great points, Shari. I'm going to turn over Linda for really to get started on an important topic. And that's communication.
Linda: [00:23:16] Yes, we've always been told that we with dementia patients, we should use short sentences and one step directions. Simple choices such as two options like, you know, two articles of clothing that you put out, and they can choose one or the other so that we validate their feelings and redirect them gently. And we watch the tone. Our tone and our body language. So from your experience, what are your go to phrases or approaches when someone is upset or refusing care?
Sheri: [00:23:48] Okay. Wow. I think what you just said in that little bit is for different podcast conversations. I wish I was writing it down. Okay.
Linda: [00:24:02] I'll send it to you.
Sheri: [00:24:04] Like that is like, woo. We could go on and on. Now, when somebody's choosing not to participate in care, if we look at it that way versus somebody refusing care, you see, there's a difference. Yes. Yes. They're choosing not to participate. When we say we're choosing not to participate, it makes us curious. Oh, you know, I wonder what's going on for them. How are they receiving this support from me? Are they feeling like they're partnering with me, or are they feeling like I'm doing something to them? And so like, sometimes it's just our perspective that we need to flip and talk about. My number one tool, I might actually say this about 50 tools, okay, but I'm going to just for now, I'm going to say my number one tool is reflection. Reflection is when you give words back to somebody validating that you hear them. And it is the best tool in the tool belt because you don't have to come up with an answer. In fact, the more you have an answer for every question, the more you have a relationship that doesn't connect. So if somebody is saying, if I'm saying get your shoes on Linda, then guess where you are here. If you're like, no, you know, I don't want to or I'm not going or whatever. Now we've got a power thing. And so reflection gets us here, right? If I need you to get your shoes on in order for me to connect with you, I want to get here. I'm going to say, hey, Linda, I noticed your shoes.
Sheri: [00:25:56] Where'd they go? Or you need them or something. That is just so you can look and notice. That is a reflection of what you're actually doing. Now, if you come up to me and you say, I want to go home, then I need to reflect and validate you. People with dementia don't need more data, right? They don't need to sit here and explain to you that you are home. What I can do, though, is say, Linda, you want to go home and then zip it. Because we approach dementia care with curiosity. This is a relationship focused approach. If I have to keep talking and telling you all the stuff, I know it could cause you distress. So instead I just zip it and see what you say, because you might very well tell me more things that I would need to know to be able to meet your need, because that's what we're doing. We don't need meters. That is our whole job as care partners. We're hoping to meet people's needs, and a sense of control and a sense of autonomy and independence are basic human needs that we often skip. Right? You got to take your pills. That's your need. You didn't eat your breakfast. That's your need. Those are true. But if I just come in powering to make sure you do the thing I think you should do that. I'm not meeting the need of autonomy and self independence and control. So how we communicate with people is key.
Linda: [00:27:32] Wow. That's very insightful. Very, very insightful. Pam, do you have any questions to add or to any other statements?
Pam: [00:27:40] Yeah, no, I, I think we have a question that's coming up with you that is extremely important. And I'm excited to have this conversation. How can caregivers respond when their loved one says something that isn't true? Like, I want to go home or even when they are home or, you know, offline. Sheri, we had this conversation. It's kind of human nature that don't that people don't understand how to work with someone with dementia to always want to correct them. And so, and I know you're going to share a tool, so maybe this will be a good time to talk about that as well.
Sheri: [00:28:17] Sure. You know, when we talk about correcting people, it's more about making sure they see our perspective. And when you've got somebody living with brain change, doing the best they can with a brain that's not working, wouldn't it make more sense for us to see their perspective than to ask them to look at our perspective? That's what correcting is. Correcting is also a way that, you know, we do this because we're respecting who the person has always been. And so like my mom or my husband or my wife, you know, they wouldn't want to talk about something that isn't true. So I'm going to correct them before dignity purposes. But in dementia care and quality dementia care, what we're doing is respecting how the brain is working now. So it's still respect, but it's a shift away from expecting them to be as skillful as they were before and really being curious about what they're able to do now. So when somebody says, I want to go home and we want to say you are home. See, you look. And then you want to give them all the data of all the things that prove your point and prove your perspective. We skipped curiosity because home is something that's going to meet my need. What do you need? What does this person have? There's lots of things that home can fix, right? But proving that they are home isn't going to get rid of their headache or their knee pain isn't going to give them a bed to rest in or all the things that home can represent. So yeah, looking at that curiosity piece first, which is hard because you said it right. That is not our impulse. We, we, this is why I say dementia care isn't a common sense task. The common sense thing is, you know, you you are you already are home, mom.
Sheri: [00:30:17] See? Or you can't have the nuts. Because that makes sense, right? My mom ordered a root beer at a restaurant. My mom has never had anything except Diet Pepsi in the last 40 years. And she orders a root beer. So they bring her root beer and she tastes it. And she just went, oh, this is horrible. Right now, she's embarrassing me. Right. This is like, this is what happens. And so I said, because I mean, by the way, guys, I created an approach to dementia care, thanks, thankful to my mom, but I had a really hard time using it with her because isn't that true? Like, you know, oh, I could teach it, but I'm not going to do it because there's so much more in it. I said, mom, you ordered that from my perspective. She ordered it. She's literally telling me from her perspective she didn't. This is the conflict. Rather than correcting. I've got to connect. So. Hey, mom, that doesn't taste like Diet Pepsi, does it? She said, this isn't Diet Pepsi. And I reflected on her. That doesn't taste like Diet Pepsi, does it? No it's not. I said, do you want to drink that? So you also mentioned Linda, two options. That's not just for clothes, right? When you give two options, you imply control. And my mom's unmet need is almost always control. So I said, mom, do you want to drink that or do you want to get a Diet Pepsi? Well, I want a Diet Pepsi. I didn't order this. You got it. Just like you with the nuts. Pam, get the Diet Pepsi because this is. She's doing the best she can. And in her moment bubble, she never ordered it. Even though in my reality, she didn't.
Pam: [00:32:06] You know, it reminded me of another example. And of all places, I saw it on TikTok and it was a daughter talking about her mom with dementia. And her mom left the house and she realized that her mom left and they were on the east coast and it was late fall and it was chilly out. And she caught up to her mom walking down the street and she says, mom, where are you going? She says, I'm walking to California. It's going to be warmer in California. I'm going to walk to California. And you know, rather than saying, mom, you can't walk to California, she said. She said, mom, you know, it's chilly here. I, I, I see that you left the house without a sweater. Are you getting a little chilly? And she says, yeah. And she says, she said, mom, I'll how about if I walk with you to California? Oh, that would be really nice, honey. And she says, but you know what? I think we need to be a little bit prepared. Would you think it would you be okay if we went home and maybe packed a few things and got a sweater? Because it's going to be chilly on our walk to California? Oh, yeah, that's a great idea. So she gladly turned around and went home. By the time they got home and she got in the house, she forgot all about walking to California. But I just thought, wow, you know what? What a great way to handle that situation.
Sheri: [00:33:22] I love that and a great example of a person with dementia actually articulating their need. I'm cold. I'm going to go somewhere warmer. That might very well be her need. So making sure when the daughter gets home, that she puts a sweater on her and does what she needs, maybe turns the heat up to meet it. Like people with dementia communicate their needs through their behavior. And when we look at the behavior as something we need to stop, we're missing the actual need. When we look at the behavior as something they're trying to tell us they need, and we look at ourselves as unmet need meeters instead of behavior stoppers, we're both going to thrive.
Pam: [00:34:04] You know, in moving on to, you know, kind of the tough moments where we may be dealing with some agitation, wandering, sundowning. When agitation does show up, what are the most common triggers that you see, Sheri?
Sheri: [00:34:20] Okay, so we're talking about how we've given words for behaviors. We give umbrella words like sundowning and wandering and agitation. And I'm like, okay, let's take that label off for a second and look underneath and see what that particular behavior communicating that they need. Because sundowning people sundown for lots of reasons. Right. It's the end of the day. This is the time of day where I'm purposeful. This is when my kids come home. This is when I make food. My unmet need might actually be a sense of purpose, whereas for somebody else, this is when my Tylenol is wearing off and my knees are starting to hurt. And so my unmet need might be pain. So we get curious again about what they're telling us their need is. If they're sundowning because they are needing purpose, then we would come in and say, hey, I could use your help. Like the glasses with the, you know, with the, I need your help with something because I want to meet your need. Now here's the intervention point, right? If we wait because somebody's going to start communicating their need down here, right? They might start looking around a little bit. And we can already tell, like most of the time when I ask people, I'm like, when can you tell? And they'll, they've already got an idea that the need is starting to brew. But if we don't meet it now, then I'm going to need to leave or wander. Right. I gotta get up here so that you can understand that I'm communicating a need. When's our intervention point? That's the other thing, right? If we're waiting for somebody to really. And sometimes we can't help it, right? Sometimes I was in the other room. I missed all the cues and now they're walking out the door. Or they're starting to get agitated. We always need to approach with curiosity. What are they telling us their need is. And then our whole goal is to meet the need. But you have to do it with relationship. It has to be relationship focused versus caregiving. This is why I call it partnering.
Pam: [00:36:31] Because if I have a question and I'm not sure that we probably handled this the best way. And just to ask you with the same client. I mean, she had every complication that you can imagine with dementia. So one of them was wandering, climbing out of windows. We caught her on the road one time in the middle of the night. And when trying to determine that need, she always her all her answer was always the same. I want to go home. We went through old pictures looking at old houses. We could never determine what she meant by going home. But that was every day. Constantly. I want to go home. How do you address that? How do you help them in that situation?
Sheri: [00:37:15] So great question. This whole I want to go home thing is a puzzle. It's a phrase I have in my brain. I can say, I want to go home. I don't know why the logical thinking part of my brain that understands what my body needs or my emotional needs are, isn't working. But I can say I want to go home. This is why it's so important for us to try and figure it out because it's sometimes a guessing game. The more we get to know somebody, the more we know what that means. It could I mean, this is why we look at it as a communication of an unmet need and hindsight's 2020. And please don't ever feel like, oh, geez, I didn't do that. Right. I did this for a living and I cared for my mom. And I was constantly ignoring the communication of the need and addressing what was. I was correcting her all the time. So please do. In hindsight, don't feel bad. Be like, oh, you know, that could have been what it is, but people want to go home when they're looking for a bed, right? When I'm so tired, I could want to go home when, because that's where I've got the food and drinks in my fridge that I like.
Sheri: [00:38:30] I could need to go to the bathroom, right? But I don't really know. I don't understand my body. I just home represents safety and security, and I've worked with people who literally lived in the house they grew up in. They lived there, they got married, husband moved in, they took care of her parents, and the parents passed away. And she's asking her husband to go home. When we're literal about it, we often will miss what the need is. This is why dementia care is a very specific thing. You've heard it right. When you know one person with dementia, you know one person with dementia. So in your situation, I'd love to say maybe she was this. Maybe she was hungry, maybe she was thirsty. Maybe she was lonely looking for something familiar. Right. So I don't know. But this is a never ending trial. If we get it, you figure it out. And then guess what? Tomorrow, the I want to go home means something else.
Pam: [00:39:32] Well, I think the safety part, you know, may be a part of her because with her husband, they've been married, you know, almost 60 years, and they're inseparable. And, you know, 50% of the time he was the man sitting at the table that wanted to murder her. And the other 50% of the time, he was the husband and he never knew what to do, didn't ever know what to say. And so I'm wondering if going home, just like you said, maybe she's looking for that safe place.
Sheri: [00:39:58] Yes. Oh, that whole I don't recognize you. And now you are the threat for me. The part of the brain that people with dementia are using really, really well is that primitive part of the brain that keeps us safe. That's the part. That's the last part to die. It's the amygdala, right? And that amygdala works even better. And it's all about perceiving threats and responding to them. And so they can be very hard for care partners because we know we're safe. Right? We're the ones taking care of you. But that's a logical thing. And their logical part of their brain isn't working. Although the primitive part's working really well.
Pam: [00:40:39] You know? And with her, I got a call at midnight one time, and it was a caregiver who apparently had training in dealing with someone with dementia. And it was midnight, and the caregiver's calling me. You've got to come over now. Oh, oh. And she was hitting her. The same woman was hitting her with a cane. And she says, " I can't stay here. I can't stay here”, you know. And I went over there and she didn't recognize me. But what I told her was, is that you're safe. I'm here. And one of her go to things because her faith was very important to her is if you would sit with her and just read a psalm out of the Bible. I mean, her mood would change completely. And we shared this with the caregivers. Now, obviously that caregiver didn't want to come back, but we were able to really calm her down. But, you know, to your point, and for anybody that's listening, you know, there is help out there. There are people like Sheri that can help you figure out how to best support and help your loved ones with dementia. So please don't hesitate to reach out because this can be a very difficult situation. So Linda, let's move on. I'm going to turn it over to you for your next set of questions.
Linda: [00:41:52] I have a question, but I think it'll go along with this next group of questions that I have for you. I know you know, burnout is a real issue. A lot of times when caring for a dementia patient, especially for a long period of time and boundaries are important and respite options. So, you know, one of the questions I have is, you know, what are some of the warning signs that a caregiver is near burnout? And when would it be time to get that extra help at home and or play, possibly look at a different care setting?
Sheri: [00:42:24] Oh, wow. Great questions. These are really good questions, you guys. This is another for for episodes.
Pam: [00:42:32] Of course it is.
Sheri: [00:42:34] It's dementia care right. We could go. Yes, yes, yes, yes. So again, back to the level of frustration when you start getting frustrated, if you're in, if you're saying, what are you doing? Why are you doing that you can't do? And in the back of your head, you're going, I know this isn't helpful, but I can't seem to stop myself. You need some help. And typically we say when somebody says, you know, when should I get some help? It's probably six months ago, generally speaking, right? You're way beyond it because you, you start recognizing you need help and you figure out how can I do this? How can I, how can I keep going? And it's never good. You gotta, you gotta add more support. The problem is a lot of family and friends say things like, let me know if there's anything I can do to help. And as care partners, we're like, oh my gosh, this is such a huge burden. I mean, I love this person, but it's also feels burden. I don't want to burden anybody else. So we're not really sure what that means. So I just get really good at being deliberate with it. Hey, you offered to help. Were you thinking just a little something or something more consistent? Right. Figuring out because I could use your help. I just don't want anybody else to feel overwhelmed.
Sheri: [00:43:48] We want everybody to be able to do this for the entire marathon, not just for a little bit. Now, when is it time to move somebody to a long term care community? Here it is. I have never met a single person where it was the person with Dementia's progression that caused them to move them. It is 100% of the time then the care partner. It's when I can't do it anymore because we make like we set boundaries, right? I'm never going to bathe my mom. Okay. That was one of mine. I did not want to bathe my mom, but I had bathed her probably about five times before we eventually got her more help in the home and then eventually moved to assisted living. So you gotta look at yourself. How are you doing? And at what point do you need that help? It's up to you. You're the one doing the care partnering. If we set it up to them and say, you know, well, when they no longer know who I am or when they're having bowel incontinence, then I will. Well, you know, it's really about what you're willing to support and how much you can support, but you got to add the support a lot sooner than you think because it will take a toll on your health.
Linda: [00:45:15] So in saying that, how can families share that caregiving experience more fairly, especially when their siblings are involved and they disagree about what's going on and what the needs are? How do you actually help them understand?
Sheri: [00:45:35] So this is a big piece of my consulting services too, because this is really hard. I mean, I was the only one of six kids who lived near my mom, so most things fell on me. My, my sister's not going to fly in from Alaska to take my mom to the doctor. Right. I had a lot of things. So it's about figuring out what people are willing to do and letting go of control. There are some people who say, you know what? I don't want to see mom anymore. I can't. It hurt. It's hard. It hurts. I'm not going to do it. I'm sorry. We can't change them. It can be upsetting. And we could feel it's not fair. But it is what it is. We're not going to change people. And the sooner we accept that, the better. But what could they do, right? If mom is home alone, could they order groceries and have it delivered? Could they manage the finances right? Could they take on some of these remodeling things and tasks that aren't necessarily the caregiving piece? And if they can't, then they can't. It's about figuring that's just that's not they're not going to be part of your team in that way. Then they might be the person that'll listen when you call. But this is where we kind of look at our team and we figure out, what do I need and what are people willing to do? And then you have to add yourself to that because what are you willing to do? What do you need help with? Look at the dementia. Care is a team sport and everybody's got different skills on a team. And not everybody can be the goalie in a soccer team, right? Not everybody's got those skills, but we're so glad we have them. So look at it that way.
Linda: [00:47:11] Sheri, what would you say to the caregiver who feels guilty for wanting a break?
Sheri: [00:47:16] So I have a whole thing about guilt because guilt is a worthless emotion and we all feel it. I get it, I get it, we do. We feel guilty. But when we make decisions out of guilt, we are filling our resentment bucket. When you do things. Because if I wouldn't do it, if I don't do this, I would just feel so guilty. Then we fill our resentment bucket. We're also doing things because that's how we feel, right? I'd feel guilty if I didn't take mom out of the facility and bring her home for Christmas because she loves Christmas, and then I. And then if I do that anyway, would I, would I regret it? So here's the relationship guilt versus regret. Because my mom doesn't is no good around a whole bunch of people anymore. And there's little kids running around and they're screaming and there's a baby crying. And my mom can't process that. But if I bring her to the family event, because I would feel guilty if I didn't, I'm not actually, that's not care. That's just focusing on my own need. So here's the guilt versus regret. We have to ask ourselves, would I regret bringing my mom home for Christmas? Yeah, that would be horrible, right? And if I'm just talking about my mom, she would not enjoy it. I wouldn't enjoy Christmas. Right? So then I, if I make a decision out of guilt, I'm going to end up resenting the Christmas didn't go so well. So it's the relationship between guilt, resentment and regret.
Sheri: [00:48:50] So I often work with family caregivers and I'll say, ask yourself, would you regret it? And if into practice, think in hindsight, right? You moved your loved one into a long term care community. You feel guilty about it. And oftentimes, if you're not sure if it's guilt or regret here, try this one. Try this out. If it's guilt, it means if I had to do it again, I probably would do it again, right? I have to move my mom. I feel guilty about it, but I had no choice. I couldn't do it anymore. Right. But I feel guilty about it now. You can't learn from guilt. Regret. You can learn from regret, right? If you regret something, then you can actually choose to do something better or different next time. So if it's regret, I regret moving my mom. Well, then you can change it. That's the beauty with regret. So when you do that for forward things in the future, would I feel guilty about it or would I regret it? If the answer is regret, then you need to rethink your decision. If the answer is guilt, then that's about you and you're removing that care piece out of the conversation. You have a right to thrive in this life. This is your life to you. Don't give your life to the person living with brain change. You partner with them. But that in no way means you need to let go of all the things that bring you quality of life too.
Pam: [00:50:21] Great, great points. And Sheri starting to wrap things up now, let's just talk a little bit about practical next steps and resources. So is there when maybe they accompany an aging loved one with, you know, brain changes to the doctor's appointment, you know, are there are there certain questions that they should ask their doctor?
Sheri: [00:50:44] Yeah, I think doctors don't get a lot of education on dementia, unfortunately. And just a little on geriatrics. It's just really, really unfortunate because every single one of us is aging. And so we don't really know what to talk about when we get to the doctor about our brain changes. And oftentimes when we talk about them we'll get back, you know, well, that's typical aging or you, you're 80, what do you expect? And so we shouldn't expect to develop a brain disease. We need to get a baseline. So all of us at the age of 55, if you can get a baseline, Medicare will pay the doctor to do a baseline memory screen. Now we have something to compare it about. Then if you start to have brain changes, you can have another one. And now you can kind of see, oh, that's weird, right? That's, that's different. These memory screens, you shouldn't lose your brain skills. That's not that's not typical aging. There's lots of things that are typical aging. So that that would be the big one. And then when we start to talk to the doctor about things like when we know somebody has a diagnosis, then we talk about driving. You know, we're worried about them driving. We're worried about them managing their own medications. We think we need some help in the home. So getting the doctor, getting a sense of an authority figure to help you with some of those things that need to get done at home can be helpful for people who appreciate authority figures. Not everybody does. And then you might go home and be like, okay, well, the doctor said they can't drive, but when they get home, they might be like, I don't care. So you're still going to have to take care of whatever needs to be taken care of. Because the doctor's not following you home. So then we're falling back on our communication strategies and other strategies to help somebody you know, be safe, but also thrive in their life.
Pam: [00:52:43] You know, Linda, I'm going to turn it over to you for to wrap this section up.
Linda: [00:52:47] So, Sheri, this has been such great information. So if listeners remember just one takeaway from today, because there's been so much information given. What would that be? And where can families find you if they want to reach out?
Sheri: [00:53:02] Wonderful. Okay. So the biggest thing is curiosity. Look at behavior as a communication of an unmet need. And our job is to figure out what that unmet need is and meet it. And you gotta think deeper than the unmet need being home. Lift the tap off and look underneath. Having some communication strategies in your tool belt will make your life way better. And when your life is way better, it's because their life is way better. These are things that I teach so locally here in the Wisconsin area, I own a company called Dementia Care Solutions. I'm going to go to Michigan and Illinois and Minnesota. Kind of the Midwest, where for professionals, I do in person advanced skill building workshops. I do coaching on the floor, and I teach the staff how to practice the skills with the residents. Those are some of the big things that I do for families. I do consulting, I can do in-person. I'm in the green Bay, Wisconsin area, and I also do virtual and phone consultations. I have an approach to dementia care. I call the fish approach, as I mentioned, which basically states people with dementia are like fish in the water and they live in the water. That's their reality. And those of us with healthy brains, we're up here on land.
Sheri: [00:54:20] And this is our reality, right? Perspective, right, Pam? When you take a fish out of the water to show them your reality, the fish will flip and flop. They don't like it. Right. So we're the ones with the healthy brains. We need to not pull them out of the water with reasoning, explaining, arguing, orienting, and convincing. Instead, we get in the water. We're curious about what the unmet need is. We reflect. We validate emotions. We apologize. We can reassure and ultimately respond to meet the need. I don't teach redirecting and I don't teach distracting. And I have an online course that teaches this. So this is the foundation for my consulting services. But I also have an online course and that's at currentofcare.com. So the dementia care solutions, a lot of in-person stuff. I'm speaking. You can find events on my website. I'm all over the place and then current of care. Think of that as the virtual platform. You could be in California or Florida and log into this online courses, four plus hours of content. And then if you choose the membership, you can actually jump into live virtual group coaching with your membership and continuing modules.
Pam: [00:55:40] Awesome. Those are our fantastic resources for anybody you know that's listening here. If you're not local, there are a lot of virtual resources. And so Sheri, I think you've done a really great job, you know, kind of recapping and talking about the key takeaways. Key takeaways from today. So Linda, is there anything you'd like to add?
Linda: [00:56:01] No, just that dementia care is really hard and the more I've talked to Sheri, the more I'm learning that it's a constant process and it's a constant learning process. And every situation is unique and it's okay to ask for help. Absolutely.
Pam: [00:56:21] You know, Sheri, we want to thank you so much for joining us and for sharing such practical, real life support. We definitely will have you back. I mean, there's a lot of topics, a lot of topics that we just kind of brushed over. But we just want to thank you for all the nuggets of information that you've given us.
Sheri: [00:56:40] Thank you so much, and thank you for what you both do well.
Linda: [00:56:44] And to our listeners, thank you for being here. If this episode helped you, please share it with a friend, a sibling, or another caregiver who needs encouragement.
Pam: [00:56:54] You know, don't forget to check the show notes. Sherry is going to share that handout that she talked with us. So that will be available for you on the show notes. So don't forget to check the show notes for resources pertaining to this week's episode.
Linda: [00:57:08] And be sure to subscribe to Healthcare Redefined advocating for aging adults and their families so you don't miss what's coming up next. So until then, take care of yourself and the ones you love. And again, thank you so much for being with us today.
Pam: [00:57:22] Thank you.