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Podcast: Helping Caregivers Cope with Dementia and Alzheimer’s

Episode 9 of The Senior List podcast with dementia expert Christy Turner.

Listen to Episode 09

Hi Friend,

Do you have a loved one or a parent that you care for that has Dementia? It can be very challenging on you, your family and your routine in life.

Today, we talked to Christy Tuner, The Dementia Sherpa. She has helped and guided over 1500 families, teaching and coaching the family member on how to communicate best with a loved one with dementia. She knows how frustrating it can be to interact with loved ones who have dementia. It is emotional it is personal. It is draining.

She has built a business around teaching and training care givers and family members how to interact with a loved one that has Dementia.

In the Interview we asked Christy:

  • Is there a difference between Alzheimer’s and dementia?
  • What’s a dementia sherpa?
  • How does the care giver ones have their parent admit they have dementia?
  • Is there anyway to get a loved one to stop arguing all the time?
  • How can the care giver stop the loved on from driving?
  • How do you know when it’s time for memory care?
  • How do you have the conversation about moving into memory care?
  • What is the secret to more patience?

Christy Turner, Founder, Dementia Sherpa

Christy Turner is a speaker and consultant, founder of DementiaSherpa and creator of the online programs Memory Care at Home, Successful Navigating the Holidays, and The Dementia Serpa’s Guide to Moving into Memory Care. She’s the featured expert on The Alzheimer’s Podcast and has enjoyed the privilege of working with over 1,500 people living with dementia and their families, including multiple experiences in her own family.

Transcript of Episode 08 with Guest Christy Turner

Heather: Welcome to Your Best Years Begin Here podcast, brought you by theseniorlist.com. Your Best Years focuses on bringing you interviews with experts and educators to live a fun, free and fulfilled life as a mature adult. I'm your host, Heather Havenwood. So, let's have some fun, and get started.

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Heather: Hi everyone. Welcome to Your Best Years Begin Here, sponsored by The Senior List, where we help boomer 50 and plus, and their caregivers, with the best resources to create a great life. Today I'm going to be interviewing Christy Turner. She's a speaker and consultant, founder of DementiaSherpa.com, and the creator of the online programs Memory Care at Home, Successfully Navigating the Holidays, and The Dementia Sherpa's Guide to Moving into Memory Care. She's a featured expert on the Alzheimer's Podcast, and has enjoyed the privilege of working with over 1500 people living with dementia, and their families. Including multiple experiences of her own family.

Heather: Okay. Well, thank you, Christy Turner. Thanks for being here.

Christy: Thank you so much for having me. It's a real pleasure, Heather.

Heather: Thank you. So, here at The Senior List, obviously we focus on people who are 50 plus, and their caregivers. So, I understand that what you do is really helped people specifically with the caregivers. Is that right?

Christy: Yeah, I do both. I work with people living with dementia, and then also their families. They need the support, too.

Heather: Yeah, absolutely. So, when you're saying their families, are you saying the people are their caregivers, are you saying … What do you mean by that, exactly?

Christy: If people in the family don't kind of understand what's going on with dementia, and don't feel like they have the support that they need to be caregivers, that makes it really difficult for the family to be as effective as they can be. And to go through a process that lasts for so many years. So people need a lot of support for something that's really tough.

Heather: Let's talk about the differences. Is there a difference between Alzheimer's and dementia?

Christy: Yes, there is. And that's one of the most confusing things, I think. There's a great big commercial out there for a home care company, that explains it really well. And they say, “All dogs aren't poodles, but all poodles are dogs.” I love that example. So everybody who has Alzheimer's definitely has dementia. That's the cause of it. But everybody who has dementia doesn't necessarily have Alzheimer's. The dementia could be caused by something else. It could be, for example, Lewy bodies, or frontotemporal, or some other type or cause.

Heather: Could you repeat that? What is the cause?

Christy: There could be multiple different causes. It could be vascular, or it could be Lewy bodies. It could be frontotemporal. There are multiple different causes. And Alzheimer's is the most common cause of dementia. So that accounts for between 60 and 80% of all cases of dementia.

Heather: Okay, okay. Great. Thanks for repeating that. What's a dementia sherpa, then? What do you do?

Christy: Well, I guide families through this rough terrain, because for most people, it's really unfamiliar. They haven't had necessarily a personal experience, or maybe somebody in their family is a little bit more distant. And they don't know what to do. So, do they need to have a plan? How do they interact, once their person starts showing changes, and acting differently, and isn't able to communicate in the same way that they used to? So really, just showing families the ins and outs, and helping them understand what's happening in their person's brain, what's making the changes noticeable. And then, what to do about them, in a loving, supportive way.

Heather: So, one of the things I'm sure people are challenged with as caregivers, is having their parent actually admit they have dementia. How do you help people help them admit that they have dementia?

Christy: Well, that's one of the things that people really struggle with. And one of the questions I ask is, what do you think would change if your person admitted that they have dementia? Unfortunately, it doesn't change anything. So, about 80% of people living with dementia have an additional condition called anosognosia. That just means that they're completely unaware that they have any type of limitation, or in this case, dementia. Their brain is telling them they're fine.

Christy: So when it comes for all of us, who are you going to believe? Me, or what's happening in your own brain? We're all going to believe what our own brain is telling us. And then for the other 20% of people, they forget. So, it doesn't change anything. But if we, as the caregivers, know that this is the case, the person has dementia … then we can best figure out how we can help and support them.

Heather: Okay. That makes sense. I'm sure that's very challenging when a daughter or son has their mom and dad, and they see them with that. That's got to be really challenging, as well as having compassion for them. And they probably want to have them admit that, but is that really gonna help? It's a great question to ask. Is there any way to get the person that they're caregiving, to stop arguing, or do they argue a lot? Is that a condition?

Christy: It's funny, because that, trying to get them to admit that they have dementia, is one of the things that can lead to arguing. And one of the first areas of the brain that's affected with dementia, is that part that we use to come up with reason and logic. And that is what we kind of double-down on, when we're trying to persuade someone to do something. Even though that it becomes a very emotional situation. So, when we're trying to, let's say, get someone to give up their car keys, and we use the reason and logic method, it would go something like, “The doctor said that you are not safe to drive anymore, and so I need to take your keys.”

Christy: The problem happens then, when the person of course, doesn't remember that the doctor said that. Or their own brain is telling them, “I don't have dementia. I don't know what you're talking about.” Instead, if we … again, we have the knowledge that this is the situation, so we can work around it, instead of confronting someone directly, if we can just put other processes into place, we get the ultimate result that we want, instead of making it confrontational. One easy thing to remember is just to make the decision that you're not going to get into an argument.

Christy: It sounds simplistic, but if you think about it, nobody needs to tell you that you can't kick your grandma in the shins. That's just a no-go. It's not gonna happen. And it's just ingrained in us. It takes some practice, but it absolutely works. And then there are lots of other methods that I teach people, that make it really easy to avoid getting into … I call it a vortex. You get sucked into this vortex, and then it's just arguing, arguing, arguing. That doesn't help anybody.

Heather: So what are some of the methodologies? I'm sure people would love to hear that here on The Senior List.

Christy: Number one is making that decision. Number two, remembering it takes two to tango. If you're not going to be involved, that makes it really tough. The other thing is, a lot of times you'll hear, “Oh, you just need to redirect the person away from the thing they want to do.” That can work, but what I find works even better is when you listen, really empathetically, to what's going on for them.

Christy: So, if a person wants to, you know, they grab their keys, and they want to go somewhere, instead of that very easily turning into an argument, what's going on? Where are they trying to get? Is their brain telling them they need to be someplace? What's driving that? So, kind of taking a step back, and figuring out what's really happening for them. Or if they're angry about something, letting them express their anger.

Christy: That's hard for families, because … especially if they feel like they're the target of it, so I appreciate it doesn't feel good. But ultimately, it keeps you out of an argument, and helps strengthen your bond. When you can really hear why someone's upset, and then empathize with them. It doesn't mean saying, “Oh, okay. Well in that case, have your keys back.” It just means going, “I understand why you're upset. I see what you're saying. And I think if I were you, I'd be upset, too. And I'm really sorry that you're going through this.”

Heather: I can imagine, though, as someone who's caregiving a family member, it's personal. Right? ‘Cause we all have our own views of our parents, and how growing up, how they were taking care of us, and now it's this huge reversal. I'm sure there's a ton of emotions that go through that process. How can you help them through that?

Christy: I think it is a process. That's a great word, is process, and it's really easy to say, “Oh, don't take it personally.” But when it's somebody you love, who is aiming sort of a psychic fireball at you, there's nothing more personal in the world. One of the things that can be helpful, is really coming back to, “This is the disease, not the person.” It's a symptom of the disease, not the person. And understanding that dementia doesn't rob people of having emotions.

Christy: Sometimes people are happy, sometimes we have moments where we feel sad or where we're angry. And moments are just that, they're moments. It will pass. And I understand it's rough in the moment, but this is where the deep breathing comes in. The thing that most people don't tell you, is you've got to do it more than once. It takes four really deep breaths and big exhales, to get that shift in your state.

Heather: What I hear with having a caregiver of someone you love and care about, this is very different than just raising a child. I mean a child, you can essentially, kind of control in some way. Like you said, divert their attention, which is very much a child. So, as far as someone who's a caregiver for their loved one, what I'm hearing, is that everything that they know to do in the world of caregiving, you know … child-rearing, even though this is their parent or a loved one who's older, goes out the window. That's kind of what I hear. Is that accurate?

Christy: I think that is probably accurate. One of the key differences is with a child, you are projecting onto the future, hopes. They're not going to not be able to walk forever. Eventually they're going to learn how to walk, and they'll master language, all of those milestones. With dementia, you're watching a lot of that in reverse. And rather than having hopes for the future, your heart feels like it's breaking, as you look at the future.

Heather: Right. Okay. Right. That's a big difference. I love that. It's a good understanding awareness. That when you're raising a child, there is a “This will pass.”

Christy: Right.

Heather: They will move through this. They will grow up, or next phase will happen. Thank God they'll no longer be teenagers forever. Right? But when you're dealing with someone who is older, and they're getting older, there's like, “When's the end?” You know, and I can understand how that frustration's even worse. And I'm sure people who are caregivers are like, “When will this end?”

Heather: And then there's that potential feeling, you're the expert here, of feelings of guilt, or feelings of shame, to even think that. You know, because the end means potential passing. Anything you can say to that person who may be thinking that, who has feeling guilt, or potential shame, or whatever that experience is for them, to even think, “When is the end?”

Christy: Well, I think that's a normal, natural thing that everybody wonders about. So one of the things that I do with families, is help them figure out where their person is in the process. And then give them an idea of how long each phase is going to last. The other thing is, I always want to help families be grounded in the moment, right now. One of the things in dementia to know is … “Today is the best day,” because of the progressive nature of the disease.

Christy: And, it continuously getting worse, we want to enjoy today and right now. Because three months from now, six months from now, we'll look back and say, “Oh, gosh. There were things I could have enjoyed there.” And I never want families to have those regrets. And as far as guilt goes, I say feelings just are. And if you know it's a feeling, and it will pass, that's okay. The best way to get through a feeling is through it, instead of trying to stuff it down, or pretend it doesn't exist. That said, it's a pretty useless emotion, in the sense that it doesn't help us do anything, or move forward.

Christy: But we're all having this human experience. So, I think one of the things that's really helpful for families, is to know that they're not alone in having those feelings. That happens for everyone. With dementia in particular, I think, as a caregiver, families can feel very isolated. It feels like the world is shrinking, as they're maybe less able to go out into the community with their person, and are spending more time at home without a social support network.

Heather: So how does a loved one know when it's time for memory care, or for them to say, “Hey, this is too much for me. I need to bring in someone else.”? Like yourself, or full-time care.

Christy: One thing that's really important, is how do you feel inside? If you're feeling a lot of resentment and anger and like, “I just can't do this anymore,” then it's time. It's a great time. Another is to, if you have the luxury of this right now, is to ask yourself, “What are my deal-breakers?” For some people, it's physical stuff. When a person can't transfer anymore, independently, when they can't stand up independently … and you have a bad back, or a trick knee, then you're going to need to have a plan into place, for when that ultimately happens.

Christy: For other people, it's the nature of their relationship. Maybe you're taking care of your dad, and incontinence or helping in the shower is indicated, he doesn't want you to have any part of that. That's where it also helps to know where your person is in the process, when these things are expected to happen. So that you can have a plan in place, and not have to make decisions in a crisis.

Heather: Right. It can be frightening, I'm sure, for everyone involved. I can see how the caregiver who's the daughter of their dad, and you're dealing with having to bathe him. I mean, there can be so many different things that they're dealing with. So, you come in … Are you like a coach? The word “sherpa” … tell me more about that. You come in. Do you do caregiving, or are you just counseling?

Christy: I don't do personal, hands-on care. But I do a combination of training and coaching. And sherpa is like, if you're going to climb Mt. Everest, you would hire a sherpa. Because that's unfamiliar, unknown territory. And you want someone who has been up the mountain, as many times as possible, preferably. And knows, “Okay, this is a good time to take a break. Watch out for this. Look out for that.” So, the whole sherpa thing is just, I've been through this before so many times.

Christy: “And here are the markers, here are the things to avoid, here are the things to watch out for, to plan for.” That's the whole principle behind that. Working with families is really the emotional support and the training, because sometimes people don't have the skills and knowledge they need, to do the caregiving job that they aspire to. And once they get those pieces in place, then they naturally, of course, start feeling more confident.

Heather: Okay. You help with the families, and you coach them through the process. Right?

Christy: Mm-hmm (affirmative).

Heather: Okay. How can somebody get their loved one to agree to move into memory care?

Christy: Well, that almost never happens because, same thing. It's like getting somebody to admit that they have dementia. If they don't perceive a problem, they certainly don't feel like they need a solution. It's kind of the same principle, as far as you know that it's something that's going to need to happen. So you're going to put that plan together, you're going to make that magic happen. It doesn't need to turn into an argument. One thing that can cause a lot of turmoil in the home, is saying, “Well, you know, Dad. I'm thinking in about three months, you're gonna need to move into memory care.” ‘What? Huh? What's going on?”

Christy: If we overshare information, or reveal information, before it really needs to be said, that can create a lot of anxiety, and then what's commonly called “behavior problems.” So really being cautious of when to share information, and then how it's presented. One thing that families do a lot, which is … I totally understand why, it's a natural inclination … is try to sell it as a trip to Disneyland. “You are going to love it!”

Christy: And they're going, “No.” Because I could say the same thing to you, Heather. Right? “I found you a great place. You're gonna love it. You don't want to live at your house anymore, right?” “Wait. Why wouldn't I want to live at home, right.

Heather: What you're saying is, there's … I mean, just because they have dementia or Alzheimer's doesn't mean they understand kind of what's going on. They don't want to leave their home. There's familiarity, even if they don't remember things. There's still a level of familiarity, is what I'm understanding.

Christy: Right.

Heather: Right. So there's … You know, and I'm sure that there's so many studies about this. And it's hard for us as adults and caregivers to understand that they might not remember my face, or their daughter's or son's face, or their grandkid's face, but yet, they know that they're going to be leaving their home and going somewhere else. Like, how do they … So it's kind of this weird thing, I'm sure. Where people are like, “You don't remember my face, but you remember where you live?” Or, “You remember your home and house, the differences what's more important?” I understand the frustration with that. So what is the secret to getting more patience? I'm sure people feel that. “I'm run out. I'm done. I'm on empty. How do I fill back up? And how do I get more?”

Christy: Yeah. I am not a naturally patient person. I would not describe myself that way. But I honestly … I have great success, working with people living with dementia. And I think people who see me in action, would say I'm very patient. But I say, don't focus on trying to get more patience. Instead, focus on what I call the good stuff. And that's, in every interaction, we want to bring this energy of respect, kindness, love, empathy and compassion. In action, what that looks like is, for example, if I'm saying, “Okay, you're going to be moving into a new place,” if I'm focused on really being empathetic about what I'm hearing back, if I'm focused on being compassionate about it … I don't need to focus on having more patience.

Christy: And it really works in any situation. So if my person, let's say, is asking the same question 10 times in 30 minutes, I don't need to focus on more patience, if I'm focused on being compassionate. Because my person has dementia, and can't remember the information. Or they're feeling anxious, and I can have empathy for that. So just shifting that focus, for us as caregivers, is so helpful. And the gift is, it naturally gives you more patience.

Heather: Yeah. I can understand that what you focus on expands.

Christy: Right.

Heather: So, instead of focusing on patience, focus on compassion, for yourself and them and everyone around you.

Christy: I'm really glad you brought that up. Because I always tell families, the first place to start with bringing the good stuff, is to yourself. Because as a caregiver, you have a really tough role. And you deserve all the empathy and compassion in the universe. And you have as much of it as you want, it's your right. So really, if you can't see doing that for yourself, think about how you would be with your best friend. You would do that for your best friend. So do that for yourself, and then you can share it.

Heather: That's true. That's very true. What you focus on expands. So focus on compassion for yourself and others. So this is great, Christy. Thank you so much. Anything else that we'd like to know … by the way, you all can go find this particular show at The Senior List.

Heather: Theseniorlist.com is dementia, D-E-M-E-N-T-I-A S-H-E-R-P-A, Dementia sherpa. So Christy, last words, and where they can find you, or how can they help. What if they're listening, and I know that you are on the West Coast. Where can they find someone like you? Or can you do this remotely?

Christy: Yeah. I absolutely can do it remotely. I have clients in Australia and Canada, even, and all across the United States. That is the beauty of technology.

Heather: Yeah, love that. Okay. Great. So you can help the entire family, no matter where they're at.

Christy: No matter where they live.

Heather: Oh, that's nice. Okay, great. Well then, you're it. You're it. So, theseniorlist.com/dementiasherpa. Any last words, or any kind of last tips for people who are listening today, and how they can have more compassion for themselves, but things that they can do with the people in their lives with Alzheimer's and dementia.

Christy: Just try to keep in mind as much as possible, that of course, neither of you ever thought you'd be in this position. I think when you really keep that top of mind, it does help you have more compassion for both of you. And you're not in this alone. You're really not, even if it feels like it. There are so many families out there just like you, so please seek the support and help that you deserve.

Heather: I love that. Well, thank you so much, Christy, for being here. I really appreciate what you're doing, and again, you go to theseniorlist.com/dementiasherpa, and there you'll have links to Christy, and on our social media, as well as her website, and the entire podcast show. Thank you for listening. For Your Best Years Begin Here, sponsored by The Senior List, where we help boomers, 50 plus, and their caregivers, with the best resources to create a great life. This is Heather Havenwood. Have a great day.

Christy: Thank you, Heather.

Heather: You're welcome.

Heather: Thank you for listening to Your Best Years Begin Here Podcast, brought to you by theseniorlist.com. I'm your host, Heather Havenwood. Please visit our website, at theseniorlist.com. Enjoy many of our community groups on Facebook. Here at The Senior List, we want to hear from you. Do you have a recommendation, or a person or company you want us to interview? Tell us. Email us at podcast@theseniorlist.com. Again, that's podcast@theseniorlist.com. Until next time … one goal, one passion. Helping you live your best life.

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