FIND OUT EXACTLY HOW YOU ARE DOING AS A DEMENTIA CAREGIVER

TAKE ASSESSMENT

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How To Find Your Community In Dementia Caregiving:

Live Monthly Meet Up

Have you wondered how to handle a loved one with dementia who constantly forgets?

Dementia care can be a challenging journey, especially for caregivers who want to provide the best support possible. In this episode, Lizette shares valuable insights into making this journey easier and more meaningful. The focus is on understanding dementia better and finding compassionate ways to handle common issues.

24:30 Addressing Concerns About Respite Care
29:02 Understanding Dementia Severity
31:28 Family Dynamics and Caregiving Roles
33:14 Decision Making and Legal Battles
34:21 Balancing Respite Care for Clarity
36:21 Resource Accessibility for Dementia Care
38:14 Seeking Support and Respite Solutions
38:52 Transitioning to Caregiving Responsibilities
41:19 Financial and Caregiving Challenges
42:36 Coping with Repetitive Questions
46:48 Seeking Assistance Beyond Respite Programs
49:51 Understanding Anosognosia in Dementia
53:29 Embracing Changes in Caregiving Approach
56:28 Managing Repetitive Questions Cheerfully
1:01:47 Patience and Cheer in Caregiving Journeys


The Power of Faith in Caregiving

Lizette emphasizes the importance of faith in caregiving. Believing in a loving God can bring peace and perseverance. This faith-based approach can make a significant difference in how caregivers handle the daily challenges of dementia.

By integrating biblical principles with caregiving strategies, caregivers can find comfort and clarity.

Handling Repeated Questions with Patience

One common issue caregivers face is dealing with repeated questions. The host advises responding cheerfully each time, even if it's the hundredth time. This approach reduces anxiety for the person with dementia and helps maintain a calm environment.

It's crucial to remember that their brain isn't working the way it used to, and they aren't doing it on purpose.

Therapeutic Truth-Telling

Instead of therapeutic lying, Lizette introduces "therapeutic truth-telling." This involves finding a kernel of truth to communicate without causing distress. For instance, if a loved one asks about a deceased relative, instead of lying, ask them where they think the person might be.
This approach respects their feelings and avoids unnecessary grief.

Utilizing Respite Care

The importance of respite care is highlighted. Caregivers need breaks to sustain their health and well-being. Even if there’s a risk of slight decline in the loved one’s condition, the benefits of respite outweigh this potential issue. Ensuring that caregivers take time for themselves is crucial for long-term caregiving success.

Addressing Cultural and Language Barriers

For caregivers dealing with language barriers, Lizette suggests practical solutions like involving a respite worker who speaks the same language as the person with dementia. This can ease communication and make the person feel more comfortable and understood.

Managing Denial and Awareness Issues

The episode covers the challenge of a loved one not recognizing their dementia. The term "anosognosia" is introduced, which means the person has no awareness of their condition. Understanding this helps caregivers approach their loved ones with more empathy and less frustration.

Community Support and Resources

The host encourages joining supportive communities, like their Facebook group, where caregivers can share experiences and find practical tools. These communities provide a positive space to navigate the complexities of dementia caregiving together.

Conclusion

Caregiving for a loved one with dementia is not an easy path, but with faith, patience, and the right strategies, it can be manageable. The key takeaways from this podcast episode are to respond with patience, utilize respite care, and seek community support. These steps can help caregivers maintain their well-being while providing compassionate care.

Home care insights with lizette cloete
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a group of people putting their hands together | How To Find Your Community In Dementia Caregiving

Monthly Meetup Kickoff

[0:01] What's up, Christian caregiver? It's Lizette, your Ask the Dementor monthly meetup host, and you're listening to Dementia Caregiving for Families. It's the show where I teach Bible-believing Christians how to navigate Alzheimer's and dementia care by decreasing your stress, planning ahead, and getting back your time despite a dementia diagnosis.

[0:33] Today, we have a special Ask the Dementor monthly meetup, and it is going to be a monthly offering that I will do every single month, and then it gets put here on the podcast where where you can hear live coaching in action. And this was the very, very first one. It had a little bit of hiccups, but I am super, super excited about how it came out. So I hope you enjoyed this live coaching from our May Ask the Dementor monthly meetup. And if you're interested, listed. The link to sign up for the next one is in the show notes below. You can come once, you can come 10 times, but this is for me to be able to serve you, this community. So please, if you're having struggles, sign up for one of these free monthly meetups and get to know me a little bit better and have your specific questions answered in a live coaching session.

Starting the Discussion on Dementia Caregiving

[1:49] Have you recently found out someone you love has dementia? Struggling to wrap your head around how to be a Christian caregiver? Searching for answers by joining countless Facebook groups but find them toxic? Learning how to cope with dementia feels difficult, but learning a Christian caregiving worldview can be easy. Hey brother and sister in Christ, I'm Lizette, occupational therapist, pastor's wife, turned dementia coach, and a daughter of dementia. In this podcast, you will learn the truth that the way to make dementia care easy is your faith. Knowing that a loving God has decreed this hard providence in your life makes all the difference. Here you will gain skills. You will be challenged by what God says in his word about caregiving, and you will learn exactly what dementia is and is not. Find clarity and certainty from God's Word so you have perseverance for this journey. Use science-backed solutions and biblical principles to redeem your time. Praying this blesses you as we dive into dementia from a Christian perspective. Let's glorify God despite dementia. mention.

[3:15] I am excited you're here, Ms. Linda. I wasn't expecting to see you, but I'm happy that you're here. I'm very happy to be here. Good. And Emma, Rose, and Tita. Well, I'm happy that you guys are here. This is an experiment. This is a new thing that I'm doing. So I'm grateful for you guys', willingness to be a little bit of a guinea pig.

[3:43] So I'm going to just, first of all, I'm going to start with giving an introduction to the format, the format that this is going to take every month. And the purpose behind this is for people to kind of be able to connect with one another. And what we're going to be doing is we're going to be doing some actual dementia coaching. And the expectations for everybody who is here, who agrees to come on or to be here, is that depending on how many people show up in the calls, I'm trying to keep them small, about five people, four to five people. We'll get about 10 minutes, maybe a little bit more, just depending on how many people are there.

[4:30] We're going to do like one question. I just want you to ask me one question and then give me a little bit of context. And then I'll ask for clarification if I need it, depending on what information I need from people. At the beginning, I'm going to have everybody kind of just introduce themselves and give a shout out and tell me just in less than 30 seconds, maybe a minute, no more than that, who you are, who you're supporting, who has dementia, and what your biggest struggle is right now related to dementia and dementia caregiving, and what your biggest joy is or something that you're grateful for. So just those three, who you are, where you're calling from, where you're here from, who you're supporting with dementia, a quick little what's your biggest struggle related to dementia and what's a gratitude that you have. So that's going to be kind of the format that we're going to take in these sessions. And then... As it develops, we'll kind of see how it goes. So I'm very grateful you guys are here. So I'm going to have Linda start. Linda, I know who Linda is, so I'm really glad Linda's here because she's making me feel not quite as chicken with my head cut off. Hey, I know it.

[5:56] So my name is Linda Burhans, and I'm a caregiver advocate, and I help care for my brother who has dementia, and just in my business it's constant dementia and I am very grateful to be here because I always learn something new a different way to approach something or just a different tweak on something and I think that's so important and what I really love about you Lizette is that you also have that Christian factor in there and I think that's really important because I don't know how anybody does caregiving without faith that that is definitely something that i am really recognizing the more i do this is one of the the vital ingredients for people to to truly have a, a much easier journey it's never going to be easy but it is easier when you have faith yeah Yeah. So Emma Rose, if I'm not mistaken, well, Linda, tell people you're in California, right? No, you're in Florida. Yeah. She's in Florida, USA. Emma Rose, you're up next, then Tita and then Tracy.

[7:12] Hello. Can anyone hear me? Yes, ma'am. Oh, fantastic. Beautiful. Hi, everyone. thank you um hi everyone my name is emma uh i'm from australia and um i'm actually very very grateful to be here because uh just like the previous person who just sorry i've forgotten your name but um i'm i'm in the same boat i care i uh my dad has severe dementia he's in his 10th year. Um, I'm his, um, obviously enduring power of attorney and, uh, Yeah, I've joined this because you're absolutely right. It was a Christian-based coaching.

[7:59] And I think you're absolutely right. You know, you're going through this journey and you're like, I mean, it's actually very, very difficult. It's actually not easy. So to have God in the center of it, it makes such a big difference. So we are very early in the morning, so I haven't had my coffee, so I'm hoping I'm making any sense here. Okay. But, yeah. You're perfectly beautiful just the way you are. Oh, thank you so much. But, yeah, I mean, just to give you a bit of a short introduction to that, I'm here because I do want to understand dementia in a different way.

[8:43] And I want to be able to give my dad the best of me rather than someone who's going in and going, I have no idea what you're doing, dad. But at least when I come out of this, I go, yeah, I get it. Yes, it makes a lot. Just like the previous sessions, I've applied a lot of things that Lietz mentioned and it's helped so tremendously. And it was only the first time. time it was just a different lens and I just love that I just love your approach so I'm happy to wake up very early in the morning I've placed everything on hold and ready to listen and learn awesome I'm glad you're here yes Miss Linda I just want to say when you know better you do better oh yes exactly um.

[9:30] Um yeah it's dementia is just a completely different world and i think i'm even more grateful that you know i'm grateful for my brain functions um that i'm able to function properly i can only imagine you know when i'm i'm relating dementia is when i'm tired and i've you know i'm down and out and and that's the only thing i like my brain doesn't function properly and i can only imagine what they're going through like they can't even that can't even like that yeah that They've lost all functions. Well, we'll talk about that a little bit more because everybody has remaining functions, and that's what we need to concentrate on. So, Ms. Tita, tell me where you are, who you are helping, and what your biggest struggle is in dementia caregiving and something you're grateful for.

[10:23] Hi, I'm Tita, and I'm from Las Vegas. I'm taking care of my husband for 43 years, the main struggle that I have right now is he's denying, he's under self-denial, he's not and I say that he has problems with his memory he just won't accept it and he gets mad so he's really in big denial, the main thing that I'm having problem with is he's driving, he always wants to drive But he doesn't have any license anymore because the doctor sort of like reported him to a DMV. So they took off his license. But every time he sees the car, he wants to drive. But I keep, you know, so it's a struggle all the time that he gets mad at me for not letting him drive. So I'm afraid one of these days he might just get the car and drive. Well, that is certainly a challenge for sure. What was that last sentence, hon? I'm sorry, I didn't mean to interrupt you.

[11:29] Well, the main thing that I have a problem with him, he's still okay. He's not violent or anything like that. The main problem he has is he keeps forgetting his short-term memory. He keeps repeating things. He keeps asking the same questions. Okay. Usually I'm very patient and I just ignore him. And my son keeps telling me, you know, like, I can't fight with him because even if I'm mad, he won't remember anyway. So I just try to ignore him and just pray, you know, that he leads me to whatever I need to do. Okay. But sometimes it gets so challenging, you know. Absolutely. This is just the quick little introduction portion, so we'll get to everybody's questions here in a little bit. Ms. Celia, if you are willing and able, can you tell me who you are supporting, where you live, what's your biggest struggle with dementia caregiving right now, and something that you are grateful for?

[12:33] I don't know if she can hear me. Or is she still coming up? Celia, are you there? I'm going to go to Tracy. If Tracy can, she was driving, or maybe driving. And Tracy, if you're able. Hey, sweet lady.

[12:56] Hello, and I'm sorry. I am still driving. Hopefully you guys won't hear Siri talking or anything crazy. I'm back in the middle of a crazy neighborhood that I've never been to before. for.

[13:08] So my name is Tracy Lamb, and I live in Florida, Tampa, Florida. And I, let's see, my mother has early stage dementia, which is why I'm here. And I don't know, what else did you want to, what else did you ask? I'm sorry. Your biggest struggle right now and something you're grateful for? Um, my biggest struggle right now, um, is my mom is starting to get very argumentative with me. Okay. Um, and then, uh, you know, and I've started just kind of agreeing with her because it's easier. Um, but she's, she is starting to get much more argumentative. And what I'm grateful for is just that I know you, Lizette, and that I know that you're amazing at what you do, so I'm grateful to be a part of the group. Awesome. Thank you so much, Tracy. Ms. Maureen, we're doing a quick little introduction. This is the first time we're doing this.

[14:19] I'm trying to have everybody stay about 30 seconds to a minute. Just tell me where Where you're calling from, who you help, who has dementia, your biggest struggle right now, and something that you are grateful for.

[14:38] Can you answer those? Okay. All I heard was. Introduction. Yes, we're doing a quick little, the only words I heard. Okay, so we're doing a quick little introduction. Can you hear me better now? Yes. Okay, who are you helping? Where are you calling in from? What's your biggest struggle and something you're grateful for? Okay. Let's see. I'm helping my identical twin sister. And I am, let's see, I'm calling from Apollo Beach, Florida.

[15:25] Let's see. What's your biggest struggle? The biggest struggle is I do everything. I live with my son and my sister and myself. And I seem to do everything for the three of us. And I'm 72. I'm not getting younger, I'm getting older. Um and um you know i'm doing everything for everybody okay and um what am i grateful for i'm i'm grateful that i'm healthy healthy and my father's 96 and he's doing great so i'm grateful that i have his genes that is wonderful well let me let me start with um i'm going to start with Linda, because Linda said she had to go to see somebody, possibly she helps caregivers as well. So, Linda, we're going to keep everybody to about eight minutes. So, start with the question that you have, and then we'll kind of unpack it and we'll go from there, okay?

[16:45] You're muted still. sorry sorry that's okay um so i've been doing this for a while but then it comes back to home all the time god always brings me back right where i need to be so i can relate um you know what i totally understand that sentiment yeah but uh i've been having this like little query in my mind lately so when caregivers say to me mom asked for dad and they say to me I tell mom dad died ten years ago and mom cries and she goes well the next day tells me the same thing you know blah blah blah and I always say tell them that dad's at work.

[17:28] Or dad went to the store but I think some people with dementia can still get that and he's not coming back from work or he's not coming back from the store so maybe the right conversation or another conversation is to have when they're looking for my husband tell me more about him okay so a different way to look at it and maybe it's just for different people it's a different way. Okay. But it's something that I would like to converse about. I would love to answer that because I will tell you, I was convicted by a pastor recently, a pastor friend. We were in a Sunday school where it came up about, we were talking about lying. And one of the things that I said to him was because for years I have struggled with the concept of therapeutic lying with dementia. And, you know, I was, I kind of came there with this, this, well, I'm going to be right type of posture because you can't reason with a person with dementia, right? So I'll never forget because it was me and another gentleman and that we're asking similar questions about And Ryan, he is a teaching pastor and he is also a seminary professor.

[18:54] He said to me, Lizette, we serve a God of truth.

[18:58] And therefore, there has to be some truth that you can speak into the situation. And from that moment on, it's hard. It's actually much easier to do therapeutic lying than to do what I've now started to call therapeutic truth telling.

[19:18] I like that. So therapeutic truth-telling is look for the truth in the situation. So I'll use this as an example, Linda. My mom and dad were significantly drinking too much for many, many years. When my dad got super, super sick and went into the hospital, I told the doctor and they put him on a alcohol detox. When he came out of the hospital, we were able to keep him off of the alcohol because he detoxed and he was so sick. I think he got scared that it was going to happen again. And he never actually went back. And it's been about two and a half years. Well, what happened with my mom was we were trying to reason with her.

Quick Little Introductions

[20:02] Dad can't drink. My mom has vascular dementia. Dad can't drink. You want to drink wine in front of dad.

[20:17] That's wean my mom off of the alcohol without her knowledge. Right. And we were able to do that so slowly and gradually that she actually did not notice. Have a clue, right. Yes. But, you know, so what I told him that whole story and I said, but, you know, there's still one bottle of wine in it. And, you know, if my mom asks me, is there, is this wine? He can say, this is your wine. As opposed to telling her that it's, you know, telling a lie. It's not allowed for somebody else. Correct. So what I've started to do is think through some of those situations, like you mentioned. Mom is asking for dad. Dad has just passed away, or dad passed away a year ago. But every single time we tell her she's revisiting that page. Yeah, I don't want that. Right. So what he what he suggested to do is to ask her, well, where do you because I use that as an example to where do you think dad is? OK. And so say so, Linda, where do you think where do you think dad is? I don't know. He's not here. OK, well, where do you think he might be?

[21:43] Maybe he's out in the yard.

[22:11] Always taught it's about four o'clock in the afternoon so the logical thing he's at work right is just to say well dad's at work right but to ask the person where do you think they are, yeah what do you think they're doing and then you can ask like you said uh well how does that make you feel? Yeah. Or tell me more about it. Those open-ended questions to get people to talk. Yeah. Thank you. You are welcome. Was that helpful? Yes. So, you know, it's always going to be a challenge because it is so much easier to lie. Well, and you know what? It's an evolving thing. Yes. What works at one time doesn't work at another time. I always felt that I wasn't so much lying. I was being compassionate. Correct. But if there's another way I can do it, I would prefer to do that. Right. And I agree. It is compassionate. But at the same time, when I'm coming at this from a Christian perspective now, and like I said, I became convicted. I'm not telling anybody what they need to do, but for a long time, I struggled with it because lying is not what we should be doing.

[23:31] So God will give us a way to not lie, but also not make the dementia response worse. If we are if we keep it in the front of our mind and we look for the creative solution i think we can come up with solutions so that we don't have to flat out lie.

[23:53] And um still have a kernel of truth to to it and just maybe validate go back more to the validation side yeah validate what the person is feeling thank you for guiding me you are welcome I'm super glad you're here. This makes me so happy, Ms. Linda. I just really, really enjoy being around you. You're such a joyful person. I enjoyed the conference, by the way. It was a really good conference. Yeah, it was exciting.

Addressing Concerns About Respite Care

[24:25] So I'm going to go to Ms. Emma and then Tita and then Tracy and then Maureen. So Ms. Emma, start with the question that you have or the the specific situation that's occurring and then tell me um then let me ask questions if I need more questions are you still there miss Emma I should have warned her earlier oh there you go oh sorry you have a beautiful lady I love your accent and it's even better because I can't see you so I can just listen I'm so sorry because I've just woken up so I'm like oh I just have to hide my face a little bit I'm so sorry um I'm just glad with the timing that it can work out for you in Australia I really am yeah thank you um sorry I just had a question but then I completely forgot but it was really around um maybe what was it um okay so I'm putting dad in respite. And that's coming up next week for about a couple of weeks. My main concern is that.

[25:33] He will deteriorate because last time he went in he deteriorated so what I wanted to do was, when I put him in this time I wanted to create an environment where because last time I didn't know any better so everyone sort of did whatever they wanted sort of within the nursing home so number one he doesn't speak English and they wanted to use a mobile phone which he thought that he could not recognize what a mobile phone was and putting it up at his face um he just didn't register that he just didn't register it so it confused him even more so what i did was.

[26:18] Although this particular place did not have vietnamese speaking workers i've then said to the the respite carer that I pay for to go into the home to look after him, to continue her services, she can then go to the nursing home.

[26:37] And just assist some of the staff within that three hours if they need to tell him something. And I'm wondering whether or not that will even make a difference at all in his settling or is that just sort of in my mind it may or may not work, you know. Okay. I'm just thinking, would that make a big difference or am I just wasting money just putting, because obviously when you're in a nursing home, there's 24-hour care. But I just feel that Dad feels so confused when people are flashing cards at him. He doesn't even read himself. And then putting in, you know, that dictaphone to say, do you need to go to the toilet? But he doesn't understand the question. And when you put it in English in the phone, it says, have you got a bull on your head? So clearly there's the translation is wrong, but that's not good. No. And the workers aren't going to know because they don't know the language. They just think, okay, I'll just put it in. But the dialect, everything is all wrong in it. And it's not their fault. And I'm not blaming them, but I'm just thinking, will that even make a difference? Right.

[27:51] So can I ask a couple of clarification questions quick? Yeah, absolutely. How long has your dad had dementia? Tenth year, tenth year, tenth year. But what is his functioning? Does he still speak? Can he still get dressed? Okay. So dad is still mobile, much slower, obviously, because he just turned 70. But he's mobile. he the communication is um miniature stories of his life so the responding to questions is, it's it's not non-existent but you could tell it's it's just very it takes a lot of time a lot of um effort repeating yourself yeah repeating yourself at home can he still go to the restroom room by himself?

[28:45] He still can hold his bowels. He can pull down his pants, but he does not recognize the toilet. Okay. So he's already moderately impaired towards the more severe side of dementia.

Understanding Dementia Severity

[29:00] Would you, is that an answer? I would agree. I would agree with that. Yeah. Okay. So let's start with your first question, or the first thing I want to say is, I'm super proud of you, as hard as this is, Emma, that you are doing respite. If you are his primary caregiver, you need to be able to take respite and you cannot feel guilty for doing it, okay? So I'm very excited that you're putting him in the respite program. Then I want you to consider that even if he were to decline a little bit for being there.

[29:43] You need the break. You cannot do this. It's a marathon. You cannot do it the whole time without taking respite. So we have to balance the potential, because it is only a potential loss, with the benefit that you as the primary caregiver are getting from getting a break. You have to take care of yourself. One of the things that I've really become convicted of as I'm doing this more is that we don't begin with the end in mind, and I'm not talking about the end of dementia. I mean, I'm talking about what does Emma look like after this process.

[30:31] You're younger. Your dad's 70, so just math-wise, you're somewhere between 40 to 50-something years old, you have a life after your parents' dementia. So you have to focus on what do you look like when you get through this process. So the respite is vitally important for you to do. Now, having said that, based on your specific situation, with the fact that your dad does not speak English. I think your solution of having the respite worker that speaks Vietnamese there for part of the day is a very good solution. And then as much, you know, are you planning on going to go visit your dad or are you going to just not be there for the two weeks?

Family Dynamics and Caregiving Roles

[31:29] Um, so can I just clarify something, um, um, I'm not the primary carer, it's his partner. That's the primary carer. Um, I intend to go see my dad every day after work. Um, but the primary carer actually has some very serious gambling issues. Okay. okay so um but in in in light of that i'm i put um what you're saying to me i'm putting myself in her situation that she still has a life although i mean our christian values tell us i'm just so frustrated with her but then again to me i have to look at her as though she's got an illness so I'm trying to put all that aside and go okay you still need respite because dad.

[32:21] Wants to be in his home and I know and I but I've asked her I'll look after dad for two weeks so you can get respite so it's not disruptive for dad but she is unrelentless now because she feels that if I punish your dad he when he comes back he'll know that I'm the better person to care for like to appreciate her more but I said but I don't have a recognition of that if his impairment yeah but I don't know if she's trying to convince me of that or she trying to convince my dad of that or she punishing she's punishing me through my dad because if I don't do her banking king or if I don't you know do all these little petty things that she just.

Decision Making and Legal Battles

[33:14] She has this way of trying to hurt me by hurting my dad it's a strange feeling and I can't well that's that's the way I language it it's it's a it's a it's a complex dynamic who is the primary decision maker for your dad i am okay but she but at the moment we're in court she's trying to take that away okay um currently you're you're the primary decision maker yes yes okay i think you're being very gracious and i think you're doing the right thing in my opinion to give her some respite. You just need to consider we can only change our own response.

Empowering Yourself as a Caregiver

[34:00] We cannot change somebody else's response. So you do what you know to be is best for your dad, for her, as well as for yourself, because you do need to protect yourself in this particular situation as well. But back to the, you know, the respite.

Balancing Respite Care for Clarity

[34:21] Since he doesn't live with you primarily, it won't confuse him more for you to go visit him. And you were going to visit him anyway after work at home. So having the respite worker come in and speak Vietnamese and help him a part of the day, and then you coming in and helping him in the evening hours a little bit may be just enough to help so that it's not as confusing. using. But regardless, even if it does cause him to have a little bit of a decline.

[34:56] Don't beat yourself up about that.

Shifting Perspectives on Caregiving

[34:59] My view related to this has radically shifted since becoming a family caregiver. Yes, my goal is to keep a person as independent as we can, but I also recognize that the caregivers have to have a break. I'll use this as an example. I went on a cruise. I never would have traveled with people with dementia, but I went on a dementia supported cruise for 10 days. And even though the people on the cruise were moderately severely impaired, and it may have made them a little more confused than they might normally be, it was the best thing for them. Even in a respite type situation in a nursing home, it may be a very good situation for him in any case, because there's a lot of activity and movement around and interaction, even though he doesn't understand necessarily with other people. So I think you're doing the right thing, Ms. Emma. Okay. Thank you. I hope that was helpful. Oh, very. Thank you. Thank you. Everything that comes out of your mouth is helpful. Oh, you're so sweet. You make me so happy. All righty, Ms. Tita, let us hear your question, young lady.

Resource Accessibility for Dementia Care

[36:22] Give everybody's computer a second to play with. Everybody needs socialization, yes. Can you unmute, Ms. Tita?

[36:42] Otherwise, I'll give it another second, and then I'll go to Ms. Maureen. Maureen's walking around. Did you know that caring for a person with dementia doesn't have to be this hard? If you are struggling and you would like to join our next free workshop, the topic of the workshop is three tips how to avoid challenging dementia behaviors without stress, anxiety, or burnout. I invite you to walk away with science-backed, dementia caregiving skills that many professionals don't even know after attending this free workshop on Saturday. If you'd like to register, message me the word workshop on Instagram or check out the link in the show notes below. All right, Miss Maureen, I'm going to have you, we'll come back to Tita at the end. Maureen is a caregiver on the move. Oh, she is. She's literally moving.

[38:06] You just need to unmute yourself, Maureen.

Seeking Support and Respite Solutions

[38:15] Now, Maureen had actually asked me a question earlier via email, and it was really interesting because I had to go research it. So I found that really interesting. All right, Miss Maureen, let me hear your question, sweet lady. Okay. Do you want to hear about the question that I had asked you about or a different question? Whatever you want to talk about tonight. Okay. This is your time. Yeah, I'm interested about the, you know, the twin question.

Transitioning to Caregiving Responsibilities

[38:52] First, you know, I do want to make a point. I already cared for a husband with Alzheimer's. And that was in Canada. And there's a very big difference in, you know, how they treat you in Canada with Alzheimer's. And they have a respite program that they don't have here in the United States. And I am very jealous about that. And, you know, that's going to be a sore point with me because I already, you know, worked with it for 20 years in Canada. And I know my sister and I are probably going to live a long time.

[39:41] And I don't know what to do about that. So maybe I want to address that. Are you talking about finding... I'm going to be her primary caregiver.

[39:57] And I don't know about what to do about that. because I'm doing everything in the house, inside and outside. I just spent yesterday raking leaves with members of our team, my church, um, helping me rake the leaves. Um, uh, and you know, I'm getting older, not younger. Um, and there's going to come a point in time where I'm not going to be able to do, um, certain things and respite. Uh, you know, I'm certainly going to remember everything that I I had in Canada at my beck and call, including weekend respite and week-long respite. Okay. And I don't know if you're talking because I had received a phone call from my son, and my volume somehow went way low, and I've got my cell phone up at max, and I can't hear you at all. So I don't know what I'm going to do because both of us, you know, I've got a pension and my social security, but it's certainly not enough to help my sister. And she's got her social security.

Financial and Caregiving Challenges

[41:20] I don't know how to deal with this. Can you hear me, sweetheart? If I put my ear, you're going to be able to see my ear. That's okay. We're not worried about what you look like. So the first thing I want to say is I'm sorry that you have experienced this with your husband before, and I know that must be super frustrating to now be in another country where things are different. But we can't worry about what happened in Canada unless you plan on moving back to Canada. We've got to focus on the here and now, what we're dealing with now. Right. The follow-up question I have is, how far along is your sister in this journey?

[42:03] Well, you know, that's interesting because at the beginning with the meds that she was on, she was quite young. Um, hostile, um, and even hit me. But, um, we went to a different, um, doctor and she straightened out her meds and she is, um, actually, um, in the mid stages and her personality has,

Coping with Repetitive Questions

[42:33] um, changed and she's kind of back to my sister again. Can she still get dressed by herself? Yes, all of that stuff you can do by yourself. But what I can't do is leave her alone like all day. Okay. So does your son work?

[42:53] Yes, he works 12 hours a day. Okay. So you are the primary person that is helping. And what I hear you saying, and correct me if I'm wrong, because I'm wrong all the time, is that you're a little frustrated because you feel like all of the responsibility to do everything is on you. Yes and one of the things that i need to do because i'm a member of the church of jesus christ of latter-day saints is that we have to go to the temple to do work for our ancestors we do family history and the closest temple to me is a two-hour drive and doing work for my ancestors, takes about two and a half hours. So that means I would be away my son's days off.

[43:51] There would only be one day that I could do that on. And our temple is going to be closed for a year starting in June. And, you know, it puts so much pressure on me. uh and it's going to be closed starting in june is that something that you can defer by a year, No. Okay. So that seems to me to be the priority for you to start with. Yeah. What that might mean is that you have to look for a paid caregiver. Every state in the United States has some respite money available through the Alzheimer's Association. There should There could be an area agency for aging in Florida.

[44:50] And Linda might actually know if she's still on here, that you can contact for, find out where to go to get, to actually get some respite money. Okay. What's the zip code in Florida, my dear? My zip code is 33572.

Exploring Respite Options in Florida

[45:32] Let me see. I'm just looking to see what the options popped up. I think this is, I don't think this is the right. It's close to Tampa. I'm close to Tampa. Okay. So you're close to Tampa. The area, so I would start with the Area Agency on Aging and the Alzheimer's Association in Florida. There is usually some respite money available, but you typically have to go through the Area Agency on Aging to access that. And depending on when in June your temple is closing, the sooner you can try to get some of that taken care of, then the sooner you can get some respite care set up so that you could maybe go before it closes in June and time it with when your sun son is off and so then he can supplement some as well the other thing maureen is you may want it since it sounds like your sister is based on what you are she's an apollo beach linda um.

Seeking Assistance Beyond Respite Programs

[46:49] Depending on how much assistance she needs, you could perhaps ask the church if you cannot get the respite money, because it's a process, right? If you cannot get that fast enough, have the church help you with that, with getting a couple of people to stay with her so that you can just go get this burdensome task off of you so that you can focus then on the next stuff. So those are the action steps I would take for you right now, since that is something that is important to you. You will feel more in control of your journey if you still are doing the things that are valuable and meaningful to you as the caregiver. Giver yes so and and you know good thing is we are building a temple within 15 minutes of where i live but it may take a year or two for completion so it's a short-term problem it's a short-term problem but the immediate problem is go to the area agency on aging yes in florida if they if you cannot get that set up in a timely manner before you have to go before the temple closes.

[48:17] Line up a couple of people from the Church of Latter-day Saints to come help you for a couple of days. Time it with your son being off and you go because that'll be the easiest way for you to burn out is not to take care of these needs. Okay? Okay. Thank you. You are welcome. We have a starting point and Tita got her microphone off. So I'm excited. Miss Tita, tell me. Can I Can I just say one thing? Fine. She might want to check out Gulf Coast.

[48:51] Community services jewish services there's a lot of oh no we are not jewish it doesn't matter, really but you are the a lot of jewish services um are they are very generous yeah oh okay i'll check it out thank you gulf coast jewish services yes okay miss linda's in florida so she was a good one to have on the call today because she does a lot of caregiver assistance anyway. Okay. Thank you. You are welcome, Maureen. And I'm super glad you were here. Thank you for being here. And Ms. Tita, tell me a little bit about your question.

[49:39] Hi. Can you hear me now? Because I... Yes, I can. You just couldn't get your microphone off it.

Understanding Anosognosia in Dementia

[49:46] And so I just moved on to Maureen so that I wouldn't use up everybody's time. I'm sorry, I got disconnected too. But anyway, the biggest struggle I have right now is just getting my husband to accept that he's got a problem because he's really on a big denial thing. And every time I tell him he's got a problem, he really gets mad and won't listen to me. Okay, so can I ask you a question? And you do not have to answer it if you do not want to. Where are you from? Oh, Las Vegas. No. Oh, the country? Oh, Philippines. I'm originally from Philippines. Okay, thank you, because you have a little accent, and I love your accent. So since I cannot see your face, I can pick up on your accent. So let us talk about that first. Let us talk about, is your husband Filipino too? Yes. Okay. And how long have you guys been in the United States?

[50:46] Oh, 50 years. 50 years. Okay. Well, you beat me. I've been in the United States for 31. Oh, yeah. We've been married for 43 years. I'm not from the Philippines, but I'm from South Africa originally. Oh, I see. Yes. And I have a lot of Filipino friends. I love them dearly. They are some of the best people in the world. Oh, thank you. Mind for to be humble opinion. All right. Right. So let us talk about what you're describing here about your husband not accepting or not realizing that he has dementia. And so this is going to be a little bit of the educational side that I bring to these conversations. There is a big, fat, fancy word called anisognosia, which literally means no awareness okay about 80 percent of people who have dementia have no awareness that they have dementia it is not the same thing as denial.

[52:01] Denial, denial is, is, you know, something to be that way. Like, you know, you're, you're a person that you love has just died, but you're, you're still grieving and you're in denial that they're gone, right? That there's denial. A person who is in denial knows that that is so.

[52:25] Anisognosia is not the same thing as denial. His brain literally believes there's nothing wrong. Oh, I see. Okay. And he cannot change that. It doesn't matter how many times you tell him that it's true. It doesn't matter how many times you try to reason with him or explain it to him. he doesn't have the ability to see that. My dad has anosognosia and it makes it a little bit harder because I have to remind myself all the time he's not doing it on purpose. His brain is just not, it's not that it's not accepting it. His brain doesn't see it at all. He doesn't see what I see. Your husband doesn't see what you see. But how do you deal with it? How do you cope with it?

Embracing Changes in Caregiving Approach

[53:30] Well, one of the biggest challenges for us as caregivers is learning on early on.

[53:39] That, you know, I'll use this as an analogy. Most of us have seen somebody who have had an amputation, right? Like they've lost a leg because of an accident or being in a war or whatever. We've seen people with a prosthesis. And because they wear a prosthesis, we know that their leg is gone. And we can see that there's a problem. Okay. When somebody has dementia, their brain is broken on the inside. The way it always used to work, it's not working that way anymore. But we cannot see it. We cannot see those changes, so it's easy to see the person the way they've always been. Which makes it hard for us to remember sometimes that something's wrong would you agree because you guys have been married for 43 years and you it's like a well-worn path right you've been married for 43 years and you have a very well-worn path of communicating with your husband I've been married 31 years. I have a really good path with my husband that we always follow the same path.

[55:04] Maureen has been her sister's twin for her entire life. They have the same way of communicating that they've always communicated. So back to the analogy of a person who's lost a leg, we can see there's something wrong. A person whose brain is changing we cannot see so it's easy for us to fall back into the old patterns of communicating okay the best strategy that i'd love for you to try and it's it is hard you're gonna have to you're gonna really have to work at it you'll have to To put it in the front of your brain is that whatever, you know, if your husband forgets something and you, and I'm just making this up, right? I don't know that you're doing this, but say he forgets something and you say, but honey, I told you so. Okay. Oftentimes the response is, no, you haven't. You never told me. Yeah. So, so, so can you tell I've done this a few times?

[56:17] So a better, a better option is, you know, you've told him, but reminding him

Managing Repetitive Questions Cheerfully

[56:24] and telling him that you've told him is not getting you anywhere. Would you agree? Yes. Okay. So another thing to maybe try is to not remind him that you've told him, but to just kind of validate, make it your fault. And this is sometimes the hardest thing in caregiving is we're the only one that can continue to change. They don't have the ability to change anymore. So if he says, you didn't tell me, then just say, I'm so sorry, honey, it must have slipped my mind.

[57:00] So it what i'm trying to get at is i don't want you to argue with him or try to to tell him things over and over if it's causing an argument in your relationship because neither of you are going to win both of you are going to get frustrated and it just sets the stage for the communication moving forward to be harder because he then isn't going to trust you in time. People with dementia, they're very sensitive to emotions. They're very sensitive. They will pick up on your emotions in a nanosecond. So if you're frustrated, he's frustrated. If you're stressed, he's stressed. If you start to reason with him and it makes you annoyed, he's going to get annoyed. He'll feed off of your energy. So how do I handle it if he asks me the same questions over and over every two minutes? The hardest thing, but the best thing to do is to cheerfully answer it like it's the first time every single time.

[58:22] It's hard. I know it is very hard. But I promise one of the biggest mistakes, Tita, I made with my mom has vascular dementia and my dad. Has mild cognitive impairment. He was diagnosed about two years ago. When my mom was first starting with her cognitive changes, I didn't recognize it because I wasn't paying attention. And I said a lot of stupid things. I said, but mom, I told you that. You've asked me that before, but we've talked about this and I created anxiety in her. Like she was anxious about the fact that she couldn't remember things.

[59:08] When it started to happen with my dad, I picked up on it faster because I'd become aware with my mom, right? The first one was kind of like, it just caught me unaware. But the second time, I noticed it sooner and I started to do things differently. And the biggest difference that I did is it didn't matter what my dad said to me.

[59:32] I just made like it was the first time, Even if it's the hundredth time, they stayed with us about two months because he was sick. And every morning I came out of the room and he said, good morning, Lizette, how did you sleep? And I said, great dad, how did you sleep? And he would tell me his little story. I'd get the coffee, go back. I'd come back in 10 minutes later. He would ask me the same, the exact same question for the first, you know, 20, 30 minutes in the morning. every time he saw me. And I just answered it cheerfully like it was the first time because I knew he couldn't remember it. And my dad, he has no anxiety about the fact that he doesn't remember stuff.

[1:00:20] So I would encourage you as hard as it is to just answer the question cheerfully like he like he never asked it before just turn into a broken record and just answer it again and again and again but do it do it cheerfully like it it make make it not matter make it not bother you because writing it down because i started like trying it now because he asked me the same question he forgot that we have two kids so i have to write it down because he keep asking how old are they, you know, where are they? So I wrote it on a piece of paper, the names, their age, and their grandkids. And how did he respond to that?

[1:01:08] He said nobody told him because he forgot. He said, like, how come I've never seen them? You know, he forgot. So I said, they're in Chicago. They work in Chicago. So I just write that paper. And when I tell him it's in the paper, and then he goes back and read it. Okay. So what you could try, since it's a very specific thing about your children and your grandchildren, you could consider having your children help you make a book, like one of these books that you can make online with photos and everybody's names and birthdays and where they live.

Patience and Cheer in Caregiving Journeys

[1:01:42] And then when he asks you, you redirect him, here, why don't you look at your book? Book uh-huh yeah I have a lot of pictures I have those books so every time I give him the book so he can see all the places we've been to and the kids as they're growing up but um I know it's just difficult for me because you know it's new and it's you know I had a lot of patience but sometimes it gets to me so I really have to learn and just keep praying you're human we all make mistakes girl we are we all make mistakes but guys thank you so much for being here today i hope you found i'm actually not i hope i know that this is super valuable for you guys i want tita i want you to tell me one takeaway then emma and then maureen and then we're going to be done for tonight okay one takeaway from tonight that you got well like to be more patient as I said the one thing that you said you know like keep asking the same questions you know to answer it like cheerfully because sometimes I really get mad and I sort of like he can see my frustration and I learn you know like I shouldn't do that I just have to try to be more cheerful all the time no matter how many times you ask me the same question and it's a hard thing but it can make a tremendous difference so Marine what's your takeaway from tonight.

[1:03:10] What was one takeaway.

[1:03:13] You know, I've noticed that my takeaway is the mistakes I made with my husband I am not making with my sister. And we learn by doing. We absolutely learn by doing. And that's the thing. We can all learn to speak dementia. So I'm really glad you're here, Maureen. I'm really glad you're here. Miss Emma, tell me your takeaway, top takeaway for tonight.

[1:03:47] Everything you've said has been validating for me. I think I've been making all these decisions for my father. And sometimes you just need an expert to say, hey, yeah, you've done the right thing. And I agree with you. And sometimes that's all I need. But I definitely have learned so much just listening to everybody's stories because I can relate to every single person. And look, I can't go through every single point there because it'll probably take me a long time, but I can definitely say I appreciate everyone sharing because I'm like, oh my goodness, yes, yes, I get that. I get it. So I just, I love just learning from everybody else as well. Well, guys, I'm really glad. Thank you so much for being here and doing this with me. I look forward to having you guys come back anytime you want to, okay? This is going to be a once-a-month thing that I'm going to do, and you can come back once. You can come back 10 times. I don't mind. This is here to serve.

[1:04:50] You're brilliant. Thank you so much. You're welcome so much. Have a good night, everybody. Bye. You too. Thank you. Thank you. Bye, everyone. Thanks for joining me today, Success Seeker. I pour my heart and soul into this program to serve you. You can serve me by leaving a review on Apple Podcasts and join our free Facebook group, Dementia Caregiving for Families. It's a positive and proactive space to navigate dementia caregiving together. Get practical tools and find support, but without the verbal vomit. It. Be a part of our community where we seek to find peace of mind and ease despite the dementia diagnosis. So join today and see you next time as our flight takes off.

lizette's parent

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About the author

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

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