Helping Families Build Lasting Relationships While Navigating Dementia

In this insightful episode, we join Lizette Cloete, a seasoned occupational therapist, as she sheds light on the concept of retrogenesis in dementia. This approach provides a deeper understanding of dementia's progression, mirroring a reverse developmental pathway.

Lizettte's rich experience and knowledge offer a unique perspective on how caregivers can adapt their approach as dementia evolves.

0:00:00 Introduction
0:01:54 Arthur's Memory Cafe - Connecting People with Dementia Worldwide
0:05:13 Becoming a family caregiver after mom's stroke
0:08:08 Difficulty navigating the healthcare system as a caregiver
0:13:30 Medication barriers and extra work for caregivers
0:19:14 Thrown into overwhelming caregiver role, reflecting on identity
0:24:11 The difficult decisions and trade-offs of caregiving
0:27:33 Desire to Create Accessible and Reliable Information for Caregivers
0:32:08 Different Websites for Dementia Caregiving
0:43:04 Developing a Strategy for Seamless Transition in Caregiving
0:53:57 The Challenge of Finding Time for Dementia Care Resources
0:55:38 Introducing the Podcast: Dementia Caregiving for Families

The Emotional Landscape of Dementia Care

Caregiving for dementia is not just a physical task but an emotional journey. We discuss the emotional toll on caregivers, addressing common feelings of depression and anxiety.
Lizette shares her personal experiences, emphasizing the need for caregivers to recognize and address their emotional health.

Strategic Communication in Dementia Care

Effective communication with dementia patients requires understanding and patience. Lizette introduces the PEACE framework, a strategic tool that enhances communication by considering the individual's perspective. This approach fosters a deeper connection between caregivers and their loved ones, making interactions more meaningful.

Confronting Stigma and Building Support Networks

One of the podcast's key focuses is the societal stigma around dementia and how it affects caregiving.

Lizette encourages building a strong support network, acknowledging the 'marathon' nature of dementia caregiving. She stresses the importance of early and consistent support, avoiding crisis-driven decisions.

The Critical Role of Self-Care for Caregivers

Self-care is a central theme, with Lizette advocating for caregivers to prioritize their well-being. She highlights the importance of acknowledging the caregiver role and creating a nurturing environment for themselves and their loved ones.

Joining Forces for a Supportive Community

Listeners are invited to visit DementiaCaregivingMadeEasy.com/start, where a program awaits to assist family caregivers.
This comprehensive resource includes a supportive community, education, coaching, and practical tools, all designed to help caregivers navigate their journey with knowledge and empathy.

Empowering Caregivers for a Fulfilling Journey

Lizette's passion for supporting dementia caregivers shines throughout the episode. She invites listeners to schedule a call for personalized guidance and join the group coaching program at www.DementiaCareGivingMadeEasy.com.

Helping Families Build Lasting Relationships While Navigating Dementia image

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Transcript

Welcome to Dementia Caregiving for Families

[0:00] Hey there, success seeker, welcome to Dementia Caregiving for Families.

Do you feel overwhelmed with the daily struggle of dementia caregiving.

[0:08] Music.

[0:12] Looking for an easier path?

You're in the right place.

On this podcast, we teach you the skills to simplify caregiving.

We unravel the mystery of dementia and guide you through the often difficult behaviors. I'm Lisette, your host and fellow family caregiver.

As an occupational therapist, I bring my professional and personal experience to this community.

Here we speak the truth, but without the verbal vomit.

I know you will find value in today's program, so buckle up while this flight takes off.

[0:55] Well, hi, everyone. Welcome to Alzheimer Speaks. I'm your host, Lori LeBay, and I am thrilled you are here with us today.

We are going to have a really interesting conversation talking about how families can be helped by building lasting relationships throughout their dementia journey so that you can relish these memories as a family.

But before I introduce you to I always like to do a couple of shout outs.

So one is through the Caregiver Connect Group in Shoreview, Minnesota.

We gather the last Wednesday of each month from 10 to 11.30 AM at the Shoreview Community Center.

Anyone in the area is welcome to come. We also do respite for your loved ones with dementia.

We just need to talk with you quick and make sure it's appropriate because it is an interactive thing. you can register at 763-913-6140.

Arthur's Memory Cafe - Connecting People with Dementia Worldwide

[1:54] And then on the second and the fourth Wednesday of the month, I facilitate a memory cafe, Arthur's Memory Cafe, which we were one of the very original ones that started back in the day.

And we are now online. So we have people all around the world who join us.

This is for people with dementia and their care partners. just reach out to me at Laurie L-O-R-I.

At alzheimerspeaks.com and then of course I want to direct you to alzheimerspeaks.com where you can find one whole section that is just loaded with a variety of resources that we have developed for you since 2009 in video and audio there's tools all kinds of different stuff so check that out while you're there you can check out our book tab and you'll You can read about Betty the bald chicken lessons and how to care.

[2:50] Which can be really comforting for families who are struggling.

But this can be used in support groups. It's written as a children's book, but adults have said that they absolutely love it because it makes them think about how they consciously have been cared for and how they care for others.

It can be used in many, many different facets.

And then of course, I always encourage you to check out Dementia Map, which is our global resource directory where we have over a hundred and fifty different categories.

You can search. There's a blog, a calendar of events, and so much more.

If you know of people who should be in it, they can grab a free listing in there to share their services, products, or tools, or we also have some paid plans where people can get a little bit more marketing things with that as well.

And if you'd like a tour, you can just go to dementiamap.com and you will see a tour button there.

And I would be more than glad to connect you at that time.

So with no further ado, let's go ahead and introduce you to our guest today.

[3:55] Well, Lisette, I am so excited to have you with us today.

You are just full of great information and I can't wait for our audience to hear what you have to say.

But first I'm going to have you go ahead and introduce yourself if you don't mind.

Sure. Thank you for having me here, Laurie.

My name is Lisette Klute and I serve two parents who live with dementia, but my background is an occupational therapist with over 30 years of experience.

[4:28] And ironically, or providentially, my specialty in occupational therapy was actually dementia and dementia caregiving long before I turned into a family caregiver of two parents living with dementia.

My husband and I are originally from South Africa. We live in South Carolina and we have a whole bunch of chickens, which is the thing that I love to talk about, or my chickens.

So just a little fun fact.

Okay, well sounds good. Well, I'm glad you came to the U.S. here to kind of share some of your insights.

You had mentioned that you've done some family caregiving. Do you mind expanding a little bit on that? Of course.

Becoming a family caregiver after mom's stroke

[5:13] My first foray into becoming a family caregiver was when my mom had what I call a humdinger of a stroke when she was 42 years old.

I was 19, and I was already an occupational therapy student, so that was not the reason I went into occupational therapy.

But it certainly did change the trajectory of our lives in the fact that my mom had this massive aneurysm.

She recovered extremely well for the, you know, for the extent of the damage that she had. I taught her to drive.

[5:52] Everybody thought I was crazy, but I, you know, believed that she could live a very full and compelling life still after her stroke.

In, let's see, 2008, my parents actually emigrated to the United States, also from South Africa, at the age of 60 and 62, because my father realized that both their children, my sister and I, both live in the United States, and that if something happened to him, my mom, if she needed help, would not actually have any help in South Africa.

So my sister was a citizen and they sponsored them to come and for years after they came, you know, things were doing really well, but fast forward 15, 16 years, it was the right decision for them to emigrate because now they do need help.

[6:46] And my husband and I are their primary care partners in their journey.

We don't provide 24-hour care, but we provide intermittent care because I had to be the evil child and take the car away.

[7:03] Oh, that's always a tough conversation, needless to say. Well, it was more than a conversation.

This one was a knock-down, drag-out fight, which was not fun, but you know, my background and my belief is that, well, number one, because of my background, I recognized the signs that he wasn't safe to drive anymore.

And then number two, because of my background, I felt that it made it even more important that I be willing to take on the battle of the car.

Because if, as a professional caregiver, I'm too scared to take on the loved one with the car, How can I expect family caregivers to take on the battle of the love of the loved one with the car?

Did that really change your perspective, doing it personally?

I know for me, dealing with others, it was like, oh yeah, you just kind of do this and this and this.

And not that I was lighthearted about it, I was very compassionate and I think thoughtful.

But then when you go through it, it's like, holy mackerels. It is a very different experience.

Difficulty navigating the healthcare system as a caregiver

[8:08] It's a very different experience. And to be perfectly frank, I did not anticipate it to be as difficult based on my background, on my educational background.

I'm like, oh, I got this. I know what I'm doing, you know.

[8:25] But it has been an eye-opening experience because it is different, and it's not different from a skill set perspective.

It's not the transfers, it's not the, you know, meal planning or medication management, none of those things.

The biggest thing that has been the eye-opening part for me, is dealing with the health care system. Like, that has been the hardest part of it.

And it shouldn't be that way.

[8:58] And, you know, because I am a professional health care provider, I know how to navigate the system. And I'm struggling.

Which means people who are not used to dealing with the health care system, they are really struggling.

And the health care system has no idea how many barriers it's throwing up for family caregivers and making a difficult enough journey even harder than it needs to be.

Oh, I totally agree with you there. Do you have just one or two quick points to tell health care providers if they're listening, what could be helpful for caregivers? Oh, absolutely.

For example, I have two examples that stick out.

I have three quick examples that stick out. The first one, when my dad got sick about two years ago, December, end of December, it'll be two years ago, when I was finally, I had recognized he was having difficulty with his thinking before that.

But when I was finally able to step in, because you know, sometimes they won't let you in until something happens.

And so the papaya hit the fan and I was able to step in and then I was able to read through his MyChart.

And more than two years before he got sick was the first time the doctor's office actually asked him, has anybody told you you're having trouble with your memory?

[10:28] And he said, yes, my daughter. And then there was crickets.

Like, nothing was done, and time is brain, so therefore we lost how many years that we could have potentially been doing things to stave off some of the changes.

That's the first one. The second one was when we got a diagnosis, finally after more than a year of me squeaking and squawking, because I was very much squeaking and squawking.

More than a year after I got involved was the first time I actually truly got a diagnosis and he was diagnosed with mild cognitive impairment.

We left the doctor's office with nothing.

[11:19] Nothing. Now, granted, to be gracious, I'm giving them the benefit of the doubt, and this is the specialty center. This is not just the GP.

I'm giving them the benefit of the doubt because I was very open and honest with them that this is my background and this is my specialty.

[11:39] However, I don't truly believe that it would have been any different had I not been. I wasn't told go here.

I wasn't hooked up with the support group. My dad wasn't given.

My dad wasn't even given something that said this is what mild cognitive impairment is.

Nothing, nothing and an appointment for a year later.

Okay, and then the 3rd example in this one, this one's the every other month problem. My mom is on one medication that's a scheduled drug.

Now, I understand that it needs to be scheduled. I understand that it has barriers up.

But the barrier is the fencing of that is the pharmacy.

I can't get the medicine excepting through the pharmacy.

But her physician's office will only prescribe it for two months at a time.

This is a medication she has been taking for over 20 years.

Do you think she's coming off of it? No, she's not.

Can I go to the pharmacy a day earlier and get it? No, I cannot.

Why can you not make it easier for me that the prescription is there for an entire year because this is something I call you every two months and say, please can we have this medication?

[13:05] But the healthcare system has put this barrier up and when I forget, because I'm human.

And it creeps up and you think you have another prescription, then there is a massive crisis. And it can be averted.

And it's like extra work that the caregiver has to do that they don't have time for, that they don't have the bandwidth for. Another thing to remember.

Medication barriers and extra work for caregivers

[13:30] And, you know, I just wish that they would realize, yes, I get there will rules and regulations, but the pharmacy is there to protect us from getting it any sooner. I can't get the medicine any sooner. Just give me the prescription for a year.

It's not like she's gonna, you know, you know, doctor, that she's not coming off of this.

Yeah, well, and even if you have it on auto renew, because I've had that problem where it's on auto renew, oh, we have to call the doctor, they haven't gotten back to us.

And it's like, why are they not getting back?

You know, but again, they're all short staffed. When you had mentioned about, you know, it took a year to get your diagnosis, is that's actually quick because you were the squeaky wheel, because most people say it's two to three years.

And when you said, you know, it was just kind of avoided in the very beginning.

Yeah. My daughter said, you know, I have problems and then just dropped all of those things. I have heard like a zillion times from people all around the world.

[14:30] So, you know, the system, the system is broken and we have to make it more comfortable and more accessible for the doctors because they don't really know I think everything that's out there.

You know that's what we were talking offline before we started.

That's one of the reasons we created Dementia Map.

We would love to get that into the clinics and you don't have to print anything out just you know give them that the URL to go to.

Because families are more than willing to dive in but they need direction because you don't even know what you need because they don't know where to go.

[15:07] And stuff. So, oh my gosh. So, you know, for you, you know, you said you were an occupational therapist, you started out, you know, doing that ahead of time.

And then, you know, you kind of got into this whole family caregiving stuff.

Was there a place in that, in that role as a family caregiver where things really pivoted for you?

Where you thought, well, maybe I gotta, maybe you gotta to turn the page or focus a little more closely in this direction or that direction? Yes, for sure.

When my dad was when my dad got sick two years ago this this December, it was the tail end of COVID.

And he got COVID, ended up in the in the ICU.

And the first go around there were like two back to back in and out of the hospitals. The first go around.

I recognized in talking to him that he probably needed to go to rehab, but they wanted to send him to a nursing home.

And I said, no, we'll bring him home. We'll give it a try.

And he came home and things were going pretty okay. It was challenging, but we were managing.

We lived about an hour away from them. But my sister had been here, so she was taking care of my mom.

I got COVID too when my dad got COVID, so I was recovering.

[16:34] And then when he came home from the hospital, my sister went home and then I stayed with them.

And between my husband and I, we provided them 24-hour care in their home for the first week.

And then he gradually got better and he was better enough that I felt that we could go back home. I could go back to work.

And, you know, he was getting home health and doing all of the, We were doing all of the things right when...

My husband was getting ready to actually go to Sioux Falls for a month in February and I took my dad to the doctor and I recognized something was going on with the doctor, another story about the doctor, right?

[17:15] I recognized something was going on with him, he wasn't doing well and I took him to the cardiologist because I was trying to figure out what was going on, you know, you start checking out every system to figure out what's what's truly going on.

And the cardiologist was kind of like, well, why are you here?

I'm like, I'm just trying to knock off every system trying to figure out what's going on with the man.

And I said, you know, something is wrong. He's he's definitely something is wrong. Will you at least draw labs?

And I mean, he was cocky as all get out and he's like, and he he at least do the labs.

This was late on a Thursday evening. And the Friday morning, I hop on my chart, and I see his labs, and he has a raging infection.

And I can tell from the lab work because this is my background.

And so I call his primary care physician, and I'm like, you need to tell me what to do.

Well, the answer was, we didn't send him for labs.

I'm like, you can still look at his labs and tell me what you want to do.

You're his primary care physician.

[18:24] So squeaking and squawking, you know, kicking and screaming, they finally looked at his labs and they told me he needs to go to the ER.

Well, I'm in Greenwood, which is an hour away from where my mom and dad were, but my husband was with my mom and dad getting ready to get on an airplane.

So tell my husband, please take dad to the ER, I'm on my way.

So he drops him off, he goes to the airport, he gets on an airplane on his way to Sioux Falls.

And when he landed in Atlanta, I called him and said, you got to come home again.

He ended up right back in the hospital. The second time around, we recognized they cannot go home. So they moved in with us.

But what was interesting was immediately I was thrown into this caregiver role And it was overwhelming.

Thrown into overwhelming caregiver role, reflecting on identity

[19:14] And I did not know that it was going to be this overwhelming.

You know, 24-hour care, washing the sheets because we're dealing with things that we've never dealt with before every single day. You know, loads of laundry.

My dad's on oxygen, never been on oxygen before. We're taking care of mom.

Just the whole drama of the experience.

And then one day I was sitting at my desk and I'm like, I was reluctant, I did not want this. I did not want to be the caregiver.

And I'm like, I'm overwhelmed. I cannot cope.

[19:50] Why are you not coping, right? You know what to do.

And then I had a realization and the realization was there are two types of caregivers.

[20:00] There's the caregiver who has decided to be a caregiver and starts to become proactive and look at the problem and not do the whole ostrich maneuver, stick their head in the sand and say, let it go away.

Or the I'm overwhelmed and woe is me, doom and gloom, nothing's gonna ever get any better type of caregiver.

And I had a choice I had to make. I'm like, which one am I gonna be?

Am I gonna be the proactive caregiver and actually assume the role?

Like say to myself, you have now turned into a family caregiver and this is a part of your life for a period of time, kind of like being a parent, right?

Your parent raising your kids for a part of the time and then they grow and flow and you're not responsible for them anymore.

Am I going to assume, like, decide to be the caregiver or am I gonna be the reluctant caregiver and just hate the whole rest of the next two, three, four, five years?

And then I stopped and I started reflecting on all of the patients I'd had over the years who were successful.

And who were not successful. And every single one of them that were the successful caregivers, they were the ones that decided actively to take on the role.

[21:21] And the ones who were not successful caregivers, they were the ones who always said something like, I have no choice, I have to do this.

You don't understand, I just have to do this. It's an obligation.

They never actually assumed the role of a caregiver.

They just did it, but they really didn't take on the role and the identity of.

[21:45] This is something I do have a choice about.

And so that was what I did.

And I think that that's a really good point because you, you know, I'm a big believer, you will find what you're looking for.

And if you are looking for it to be horrible, it will be. But if you're looking for those moments of joy, you will find those as well.

And there's lots of them out there that nobody talks about because they look different and they're smaller.

You know, but I think that's an excellent point right there that just people do have a choice and they will experience what they want the majority of the time.

Now, there's still gonna be times when you're gonna be overwhelmed, even when you choose to be there.

When you were talking about caring for your dad and him coming home and doing the laundry, I remember my parents got in a car accident and my dad was having some incontinence problems and he would not, they moved in with us, he would not use the commode next to the bed.

He wanted to use the toilet and he would only sleep with his boxers on or his PJs. He wasn't, you know, he had broken an arm and had broken ribs and so it was hard for him to maneuver.

And he would...

[23:04] Pee on the bed himself, the floor, down the hall, into the bathroom.

And I remember after like the third day just bawling on my hands and knees, scrubbing the floor going, dad, please.

And, and I think other family members like, well, you're just doing laundry.

No, it is way more than that.

And you just, and it's just, you know, in laundry, I don't mind doing, but it was so much constantly and trying to keep up with it.

[23:37] And I remember being at that exhausted point of, oh, I just don't know.

I just don't know if I can do this.

And then he agreed to kind of work with us and we got things under control.

But it's real easy for other people to look in and think, well, that's just a simple task.

No, it's not because you're not looking at all the other things you're managing. Right.

My decision was almost a little more complicated than that, because it was the whole incontinence, you know, not managing the bladder at night.

The difficult decisions and trade-offs of caregiving

[24:11] And because I did work in health care and I did have access to stuff, the nurse is like, well, why don't we try a condom cath?

You know, and then my husband was helping my dad with the condom cath, and then my husband had to go away.

And then the decision was, am I going to mess with the condom cath, or am I going to mess with laundry?

[24:34] Yep. Yep. And to be perfectly honest, I'm like, I'm doing the condom cath.

I'd much rather do that than the laundry. But it was a hard decision, you know? So it's like, choose your poison, pick your poison. Which one do you want?

Because yes, it wasn't an optimal or an ideal situation to help my dad put a condom cath on, but it was my decision to do that because I would rather do that than spend three hours a day doing the laundry every single day.

[25:07] Because it was exhausting. Yep. Let's talk about you received a grant to kind of develop a program.

Let's get into that in because I'm really excited for people to hear about this.

Well, wonderful. Well, I'm actually going to take a step back because it was a little bit of a journey in how I got to the grant.

And one of the one of the, you know, speaking about the whole choice that we make and we get what we look for, right?

When I started down this journey of starting this business and wanting to serve people living with dementia in a different way, which was before my parents got, you know, before I started helping them, one of the reasons I started the business was because I started getting very active in a lot of online Facebook communities of people, you know, dementia support groups, online dementia support groups.

And one of the, two of the things that struck me as I was in those communities were the, I call it the verbal vomit, the total doom and gloom and the blah, like everything is bad, everything is negative, Everybody just has this, it's very toxic, extremely toxic.

And then I get that people are...

[26:30] Answering questions for one another about what worked with them and their loved one and some of the information is good but there's no gatekeeper and there's nobody that's like how do you know that that information is reliable and good.

In those facebook groups now i will say i do have my own facebook group however i'm moderate it very well. You know, I'm very active in there and I make sure that the information being relayed is accurate.

But these huge Facebook groups with 40, 50, 60,000 people in, unless the people who are running it are truly moderating them, it's just verbal vomit.

And then, so it was, that was part of it and I started to have this desire to create something where people who are family caregivers or caregivers of people living with dementia can find accessible and reliable information.

Desire to Create Accessible and Reliable Information for Caregivers

[27:33] So that was kind of where the seed started. Then, you know, for three years I was working my way out of a job, still working full time, trying to start a business.

And earlier this year, I had finally transitioned out of working as a full-time occupational therapist and just concentrating on starting my business, which is called Think Different Dementia, because I want people to think different about dementia and dementia caregiving.

And then I came across this grant here in South Carolina, and I decided, I'm like.

[28:09] I'm like, am I going to apply? No, no, I'm just going to waste my time.

I've never applied for a grant.

Okay, well, maybe I should try. Right.

And I just, I applied, I tried. The idea, the concept I had was I wanted people to be able to access reliable information and community and coaching all on a cell phone.

[28:36] Like that was the proposal that I sent to the grant.

And so the purpose of the platform that I'm developing is that it have a community component for all of the care partners, kind of like a Facebook group, but more controlled and moderated.

So people can hop on there and ask their questions and then once a week we get into a Zoom room and the participants in the group can actually ask me and or other professionals that over time I'll bring in their particular questions with their particular loved one in order for them to get the coaching component.

So, we get a lot of, you know, I get a variety of different people at variety of different stages in the process.

And then the third component of it, which is what I'm starting to build out now, is the didactic, the educational.

So the educational will be there and more searchable.

So if your mom has Alzheimer's, you don't need to learn about vascular dementia.

So they'll be separated out.

So the education will be there. And then the fourth part of it is the resource section.

[30:00] Where I'm putting in all of the fun and interesting places and resources, including Dementia Map.

You know, I have it in there for people to be able to find so that I'm trying to take all of the information that I can and start to categorize it for people to make it more accessible and easier for them to get.

But the plan behind it is that all you need is a cell phone.

You could just listen to the videos like a like a podcast on a cell phone and you can do everything legitimately the whole entire program just off of your phone.

[30:35] And so is Think Different Dementia, is that a dot-com or a dot-org?

So actually that's not my website address. Okay.

I'm not actually using, that's just the name of the company.

I use the website DementiaCaregivingMadeEasy.com and the reason I do that is because I do want dementia caregiving to be easy for people.

I know people don't believe it can be easy, which is a big barrier for a lot of people.

They believe it's going to be hard, there's, you know, it's just challenging.

It's always going to have challenges, but so is life, right?

Everything has challenges.

But you don't know what you don't know, and just because you don't know how to make it easy doesn't mean that it cannot be easy.

So we can make it easy for people. people are just not, right now, one of the biggest things I've noticed over the last several weeks is people do not even recognize that they can find help.

The family caregivers of people living with dementia, they're not looking for help.

And I really am starting to conclude it's because the whole mindset of the whole world is like, oh, you've got dementia, there's nothing you can do.

And there's nothing further than the truth.

[32:00] There is a lot you can do to make it easy for both the person living with dementia and the people around them.

Different Websites for Dementia Caregiving

[32:08] Okay, I have a question for you and I'm going to cut this out, but when I go to, because there is a website, dementia, what was it?

Dementia, it was your thinkdifferentdementia.com, but you don't want to push people to that site? Not at the moment.

It is, it is, no, not at the moment. The primary place I want people to go is DementiaCareGivingMadeEasy.com. Gotcha.

Okay, okay. But yes, there is a website called Think Different Dementia. Okay.

So that's, I think we should say that because, because you said that that was there.

I'm gonna, when I do our little piece here, I'm gonna make a comment on that because I think that's important so we don't push people to the wrong place on that.

So let's see. So now you also do free workshops, is that correct?

[33:04] Yes, about once a month I do a free workshop for the family caregivers of people living with dementia.

And primarily what I'm doing in that workshop is I look at, I teach people three things.

I, we talk about how, how it changes the trajectory of your dementia caregiving journey when you're ready.

Like we talk about readiness, how to become ready, you know, what the, what that looks like.

The second thing that we look at is that really ultimately there are only four plans for people living with dementia.

And what those four plans are and get people to start to consider where they are and what might be the right plan for them.

And then the third thing we look at is a repeatable process for them to be able to start to recognize potentially when they are, when the person that they're helping is maybe getting ready to start to have quote-unquote a challenging behavior.

[34:13] Please note I'm saying quote-unquote because the more I do this, the more I'm recognizing that we, and I mean me, and society and everybody around this person living with dementia, we are responsible for the challenging behaviors.

It's not challenging to them.

It's challenging to me, which is why it's called a challenging behavior.

But we are primarily, to a large extent, the cause of what we see.

Yeah, and I don't even like using the word behavior because I think it's just...

I mean, I don't like to be told I have a behavior. That's kind of a negative thing.

So I try to teach people that, to kind of flip that term, just kind of how we have from caregiver to care partner, care companion, and to use it as, look at it as a reaction or a clue that something's off, they don't know how else to express it to us.

And we're the ones that are supposed to be cognitively enabled, so it's our job to try to back that out and figure that out.

I 100% agree. I guess part of the reason I use that word is because that's what is common for people to understand, I agree it's not a behavior.

[35:38] I'll use my mom, I'll use my dad as an example with the, I'll use both my mom and dad as an example, how I finally recognized that, I was contributing more to the situation than anything else.

When my mom started to have the the changes, and I believe she doesn't have a diagnosis and I don't need to get her diagnosed in order to help her.

But I'm pretty sure my mom, because of her massive stroke, has some sort of a vascular type of dementia. It's just it's what makes sense.

And when she started to have her first changes in her thinking processes, her behavior started to change and I didn't pick up on it, you know, social social behavior.

And then the second sign I noticed was, you know, she was starting to have trouble with her memory and I remember distinctly.

[36:33] Doing stupid, saying things to her and the kids and my dad and my husband, and like, but mom, you said that before.

And don't you remember you told us the story, you know, all of the stuff that we would, because we don't notice it, because we're not on top of it, that we say that we do at the beginning, that actually caused her anxiety.

She had a lot of anxiety, a lot.

And then when my dad started to have the same problem when they were staying with us.

For the two months they stayed with us, every single morning when I came out of the room, he would ask me, you know, how did I sleep and, you know, just normal general questions.

And I would get my coffee and I'd go back and I'd come into the kitchen every single time I'd walk by him for about four or five times for the first hour to hour and a half in the morning.

He would to legitimately ask me the exact same thing.

Like, word for word, not even a variation in what he said.

And every single time I walked by, I said, I answered him cheerfully and happily.

[37:42] Every time he asked the question.

I just answered him, and I never made a big deal of it.

I never once said to him, but you said this to me before, I just answered the question.

And the remarkable difference between my dad, who has no anxiety about the fact that he's starting to lose his thinking processes, and my mom, who had so much anxiety when she started to show trouble, was remarkable.

And then circling back to the car, you know, every single time I would have to go in right as we were fighting over the car.

If I didn't sit in the car and frame myself and say he's going to try to push your buttons, don't respond.

If I didn't do that before I went in, we would go whoosh, we'd have a fight, right?

Because I wasn't smart enough, because I didn't put it in the front of my head that I needed to be the one thinking this through and not reacting.

But if I took the time and I did it beforehand, then we didn't.

And so I really started to recognize as a family caregiver, you know, putting my professional brain on, we, the people around the person living with cognitive impairment, we're the ones that are not getting it.

And we're the ones that are making the mistakes.

[39:09] Well, and I love that you you became conscious on how you care, because I think we take caregiving for granted. We just kind of go through it, but we're not really thinking how our response is going to trigger them.

You know, we just do what we do and we respond how we respond and we take no responsibility for how someone else is going to react to us with that because we're too busy being busy.

And so when you're conscious about it, you really do slow down and go, OK, this this is going to trigger a battle, you know, this is going to, I mean, cause you learn those things over time.

Right. And gosh, it just makes it so much easier.

I want to take a break really quick right here for people who are just tuning in.

We are talking to Lizette Clete and she is an occupational therapist who has turned a caregiver coach and she, is, I've just been giving us some great, great tips, how to deal with dementia, you know, how to be a gracious caregiver and how to look at this journey a little bit differently.

[40:12] And we're going to be learning more as we go, but I would highly recommend that you go visit her site, which is DementiaCaregivingMadeEasy.com.

And there you can even sign up for her free monthly workshops.

And is that where they can access your podcast as well by going there?

They can get the podcast there, but the podcast is on all of the podcast apps and it's just Dementia Caregiving for Families, which is a little easier.

For people to find just on any like Podbean, Spotify, Google, podcasts, Apple, everywhere.

[40:50] Okay, wonderful. And I did just want to make a comment, you know, earlier, you were talking about think different dementia, not to go to that website, you're really pushing people to the to the other site at this point.

And again, that is dementia caregiving made easy. And don't we all need that.

Let's continue on. I can't believe how fast this time is going.

I want to make sure that listeners hear some of the success stories of your program.

And because I always think that just steers us in a, in a different direction and it reinforces like, okay, this is real.

This actually works. It's always, I was reflecting on that.

When you think about success stories, it's like It's hard to pull one out, but one of the things that I really enjoy about how I'm putting this program together is I made a decision that caregiving and dementia caregiving is more than just one person, right? It's not just me taking care of my dad.

It's me and my sister taking care of my parents, right? So one of the biggest decisions I made is that whoever joins the group, the whole care circle can join.

[42:07] So I have sibling sets in the group that are all supporting a parent.

And one of the big things that they really wanted to achieve was get everybody on the same page.

Because I don't know if you have siblings, but siblings don't always see the same thing the same way. That would be my siblings.

Yeah, so one of the benefits of having many of the, you know, as many of the care partners in the group as possible is that you have an impartial person who is helping everybody look at the problem of helping two parents with dementia Yeah.

[42:55] But from an impartial perspective and not from I'm sister one and this is sister two and we've got our baggage from years before.

Developing a Strategy for Seamless Transition in Caregiving

[43:04] So that was a good success story. What we did is we did a couple of, implementation days where I sat with them and we developed a whole strategy for their parents, that will make it a much more seamless transition because both parents are earlier on in their journey, that's one wonderful success story, getting the whole family unit together on the same page.

Another opportunity that's been really helpful is one of the ladies in the group is supporting a mom who lives in a CCRC, which is a continuing care retirement community.

[43:50] She's in the independent living and potentially will need to be transitioning over to assisted living or memory care at some point in the future.

And as we were dialoguing and as we were working through some of the questions she had, one of the questions she asked me was, well, why do I not do whatever it is, right?

Because my mom, her mom's still at a point where she can kind of reason through it with her.

And I said to her, I'm like, I'm not training, I'm not, I'm training you for where I know this is going in the future.

I'm not training you for right now.

But if I, if I allow you to continue to say what you're saying to your mom right now, even though what you're saying isn't inherently wrong.

[44:36] Six months from now, when your mom's not able to reason anymore, you're in a habit of saying that particular thing, and we've lost the opportunity for you to have learned the skills ahead of time.

So primarily what we're doing in the group coaching component is truly honing that person's ability to be able to communicate more effectively with the person that they're helping.

What was interesting is that she actually said to me, like, when you're not around, I hear you in my head, and then I kind of know what I need to do, what I need to say. So it's been kind of fun.

[45:15] Well, and it's funny when you were talking about her being able to hear in her head, that stuff is so true.

I mean, just being able to bounce things off of people and then knowing, again, that you're not alone.

You've got other advice and people who have been through this and have talked to many, many people.

It is nice to have that kind of calming voice as a backup, up as a reminder and stuff in your head.

As far as feedback from people going through the program, what are you hearing from them?

One of the biggest things, and I knew this to be true, which is why I wanted to do this in a community setting, was that the people that are in the group, because the person that they're caring for or the people that we're supporting, so the people that we're supporting are not in the group, it's the people who are the care partners, the care partners are in the group.

But say there are 10 people being supported, they're all at a different place in their journey.

And what a lot of the participants are telling me is that when I'm working with somebody whose loved one is a little further along in the journey, they are learning about things that they hadn't thought about, to know to even expect yet.

[46:43] And so even though their loved one isn't quite at that point, they're getting benefit from, the repetition earlier on to be able to learn how to problem solve and look at this independently on their own.

And then what I've truly found remarkable is how the people in the community are starting to support each other.

And that was the purpose for me in putting the care partners all together in the group because it is a supportive group, but it is not a support group.

[47:19] But it is curated and controlled and people can ask questions, but I'm not allowing people to just...

Vent like there's there's a there's an opportunity for I'm having a hard day, but then let's fix the problem Yeah, let's find the solution Let's do something different and not just stay in that headspace of a woe is me and doom and gloom Oh, yeah, cuz I mean I would hear many people go gosh I went to this group and I felt worse leaving than when I walked in the door because it just took a dive.

And so that moderation and helping people get through it is really important.

I think the other thing in terms of the group itself, and you said that how they're supporting one another, is you go into these groups. Anyways, I know I did.

I went kicking and fighting as I didn't have time.

And I actually went to my first support group because I was gonna listen to somebody speak, a friend of mine. And then he got sick and didn't show up and then I couldn't leave. I was kind of stuck there.

[48:27] And that's how I started. But you learn so much from people and you realize you know a lot more than you think you do because you're 10 steps ahead of somebody else.

But we focus on being 10 steps behind, is our natural state.

And so, I know when I do support groups and things like that, I personally learn so much from them sharing their journeys and it's so powerful to the whole group and to them as a whole.

So I think that that's really a wise way to do that group because there's support groups where you're talking at people and then there's supportive groups where people are talking together.

And there's a really big difference. You actually brought up something I find very interesting because I believe this is a problem that a lot of people have, and that is that they don't believe they have time to invest in doing this.

[49:33] On the front end. But what my experience has been is that the people who are investing in doing this on the front end, they're the ones that are that are actually able to do this over the long haul.

Because the reality is, you know, if you've been around any person living with dementia, if you accidentally step in it, it takes you two hours to get back out of it.

[50:02] Because we've caused whatever it is that happened at that moment.

[50:09] So, yes, a time commitment to participating proactively in a structured group environment does take time.

I understand that. But you're going to spend the time.

[50:24] And you're going to save the time. But you're going to spend the time.

You can choose which time you're going to spend. And you're going to spend it on the front end and then avoid it on the back end and save time, more time on that end, or you're going to not spend it on the front end and every single day try to figure out and cause inadvertently a lot of what you're seeing and waste so much more of your time where you can learn to not start down this road.

You can stop it before it starts. Well, see, and for me, I looked at it that I didn't have time, that I couldn't do one more thing for my mom.

I didn't even, it didn't even occur to me that it would help me.

I mean, that it would be supportive to me, that it would make my journey easier.

I just looked at it as, it's one more thing.

I looked at my calendar, I cannot do one more thing for this.

And I didn't really understand the, um, what being with like-minded people who understand what you're going through, what a revelation that is because I was so used to nobody gets it.

And how do we, how do we get through to people to understand that they do need to be seeking this out earlier on.

[51:51] Because that is a big problem that I'm truly running into that people have, people know their loved one have dementia and then they don't, they don't do anything.

Yep. Well, I think part of it is turning the channel in terms of who it's supporting and how it will help and really almost bulleting those things.

Being part of a community, noting the pain point of everyone feels isolated and alone and no one understands.

And to me, that's the number one thing that's happening.

But there's that stigma of those groups that do go down the rabbit hole.

[52:29] And for me, I'm like, I don't have time for that. I don't have time for that.

You know, and so I was shocked when I went to a group that was facilitated and they laughed.

And I don't think I had laughed for a while, you know, because this is serious and you have so much on your plate and realizing that your soul can be filled.

And it's okay to state things that maybe you wouldn't state to others because you know they wouldn't understand.

Everybody gets it. There's not, there isn't judgment and people share their strategies and everyone's journey is different, but it's still so similar.

I think it really is to me about camaraderie and support, but I don't, I think it's the word support kind of gets overused and is a misunderstood and it's really almost like a, this is going to sound real silly, but almost like a survival, survival peer group that you can be authentic because I think as care partners, we hide a lot of things because we know people are judging us and watching us all the time, Where you can just be yourself and you can be honest and people will help you try to figure out, you know, best opportunities ahead in terms of how to deal with it.

And so many of the things are really simple things we can change.

The Challenge of Finding Time for Dementia Care Resources

[53:57] And I think part of the thing to overcome is we think, oh, my gosh, it's a whole other big realm of, you know, I'm going to have books to read and homework to do, and I just don't have time for all of that.

I don't think people really understand what it means or what it looks like and how it makes you feel, I think, is most important.

Right. So I find it interesting on the books to read.

It's way more effective asking a particular person a particular question about a particular loved one than trying to read a book and pull out the specifics related to you, which takes a lot more time.

I have read hundreds of dementia care books and dementia care giving books, and I don't find them to be necessarily an effective way for people who are struggling to get the information that they need, because you've got to pull it out yourself. Well, it's not fast enough.

[54:55] Yes, it's not fast enough. Yeah, and it's not authentic and you're not getting the whole story where when you're talking with people, you're reading the non-verbals and all the other stuff that comes with it and you feel more connected and you have an opportunity to ask a question if you don't quite get it. Exactly.

Which you don't have, you know, with a book or with a webinar and things like that sometimes. I do want to make sure that we talk about your podcast that you just started, Dementia Caregiving for Families.

Let's talk about that because we're running out of time here. I understand.

[55:32] I knew that was going to happen with us. I told you I could talk forever.

Introducing the Podcast: Dementia Caregiving for Families

[55:38] So do you want to tell us a little bit about your podcast? Yes, so I started a podcast.

It literally is week one. It just launched last week on the 20th of November.

I launched it in November specifically because it's National Family Caregiver's Month.

And I wanted, I really struggled with who do I want to serve?

And then I realized that family caregiving is very isolating, like Laurie said, right?

And trying to find community. but dementia...

[56:16] Affects whole families. It doesn't just affect the person living with dementia and their spouse.

It affects the person, their spouse, and their extended family.

[56:28] And so my purpose behind calling it Dementia Caregiving for Families is I want the entire family of somebody who is living with dementia to be able to come.

They're short episodes. I'm trying to keep them between 20 to 30 minutes long, not super long, just very organic and down and dirty and using my 30 years of experience as a professional caregiver to answer particular questions just from my frame of reference and my viewpoint.

I'm thoroughly enjoying it. It's been fun.

We'll see how it goes over time, but it's just consistency over time now.

Yep. Yeah. And people will enjoy that because they do want the down and dirty in the quick take of big picture.

And this is how you can attack this. This is, you know, they want in the trenches real life stuff.

And I think so often anyways, I felt like this and again, my mom's been gone since 2014, lived with it for 30 years.

But so much of was just medical and academic models that really weren't tested, you know, and it was, you know, this is the diagnosis and this is what you can expect, but it's like, well, yeah, but now what do I do with it? Yeah.

[57:49] You know, how do, how do we live well? And I think that's what people really want. And that, that's it. How do we live well?

Yeah. Like all of us. How do we still live well?

How do we still make good memories?

How do we still support? How do I still have a relationship with my husband?

And with my children and be a primary caregiver and how does this impact my relationship with my church and with my sister and just everybody I mean dementia affects everybody in the community it's not just the family you know I mean it affects the community and it affects the entire world and so I'm hoping even just that these short little programs really are focused on education, practical skills, and tricks and techniques to use.

But really, honestly, the big thing is like what's between our ears.

Our mindset about caregiving will frame how we are as a caregiver.

[58:54] If we don't learn resilience, if we don't learn, you know, to think our thoughts about the good things.

You know, what is still possible? What can we still do together?

How do I do it a little bit differently but still maintain this relationship, versus the alternative, the doom and gloom and the circling down?

Because it's a loop, guys, and we can stop it. Our minds are very powerful.

And we can stop that loop. The problem is people aren't saying that out loud and people aren't teaching people to think about it in a different way.

Yeah, well, for me with that loop, and then we need to wrap up, I, you know, I could go, I could spin out of control too. I mean, just like anyone else.

And so what I found for me when I was spinning down that loop, I realized how lucky am I to love so deeply to hurt so bad to have this affect me like this, because some people never love that deeply to begin with.

And, and that pulled me back up, you know, thinking, gosh, you know, how lucky am I?

I mean, and it really is that mindset, I think, from what we've been told, all the stigmas that have kind of set us up to fail and to feel like caregiving is just a huge burden.

[1:00:18] And there's a lot of beauty and there's a lot of life lessons that can be applied in all of our life, not just in dementia, which I think is overlooked.

Lisette, I am so thrilled that you were with us today.

This has just been an exceptional conversation. You've given lots of great tips and I'm sure our listeners are listening and going to be checking out your website as well and your podcast.

[1:00:44] Again, they can go to Dementia Caregiving for Families to search for your podcast on Apple and Google and Spotify and all those others.

They can go to DementiaCaregivingMadeEasy.com and sign up for those three tips on how to avoid challenging behaviors.

We all need to learn this stuff and we have to just open up the door and realize that life wasn't perfect before dementia hit.

So stop trying to hold to that standard now, you know, and know that you're not gonna hit the mark every time, but you have to release that guilt and move forward.

Cause a lot of times your person with dementia is not even going to remember an incident that's going to eat you up, you know, inside if you let that inner critic go out of control.

So Lizette's going to be able to help you with, with so many different things through her, her coaching program and just helping families really build those lasting relationships so that they can create those memories that will give them comfort.

[1:01:52] Not only today, but in the future, and to be able to share that with other family members and friends as well.

So again, thank you for being with us, Lizette.

Thank you so much for having me. Finally, I just want to, again, point you in the direction of alzheimerspeaks.com.

Lots of free educational resources you can grab there.

Just go to that free educational tab.

You can also check out our book, Betty the Bald Chicken, Lessons in How to Care.

And of course, don't forget about Dementia Map that has 150 categories that you can search, lots of wonderful information, just DementiaMap.com.

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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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