Unlocking the Key to Successful Caregiving

In this special bonus episode, we delve into the heartfelt topic of supporting family caregivers of individuals with dementia.

In this special bonus episode, we delve into the heartfelt topic of supporting family caregivers of individuals with dementia.

Coinciding with National Caregiving Month, the conversation casts a light on the intricate healthcare navigation caregivers must undertake.

The episode recounts a personal journey through the complex process of diagnosing a loved one's cognitive impairment, underscoring the critical need for early detection and proper intervention.

Unlocking the Key to Successful Caregiving

In this episode:

0:00:00 Exciting Bonus Episode after Thanksgiving

0:01:38 Unraveling the Mystery of Dementia Caregiving

0:03:24 Introducing Lizette, Dementia Care Specialist

0:06:11 The Struggle to Get a Diagnosis

0:08:57 The Importance of Early Detection and Intervention

0:13:01 The Stigma and Fear of Cognitive Impairment

0:15:59 The Frustration of Dismissive Doctors

0:19:24 The impact of delayed medical help on quality of life

0:29:59 Importance of Seeking Help for Caregivers

0:35:35 Seek Expertise and Curated Resources for Caregiving Support

0:37:53 Sidestepping Arguments and Emotional Sensitivity

0:40:32 Acceptance and Readjustment in Caregiving

0:43:24 Passionate Perspectives on Caregiving and Alzheimer's

0:45:09 Cherishing Moments with Mom on Her Own Planet

0:47:13 The Challenge of Taking Away Driving Privileges

0:50:19 Free Workshop: Assessing Readiness for Caregiving

0:53:06 The Cost of Nursing Home Care vs. Paid Programs

0:56:07 Take Action: Get Help Early and Often

0:59:31 Join the Kick Alzheimer's F Movement on Facebook

Listeners are walked through the all-too-common frustrations encountered within the healthcare system and society's hesitance to confront cognitive health issues.

This candid talk inspires listeners to seek knowledge, choose empathetic doctors, and become staunch advocates for those they care for.

The episode doesn't shy away from the pivotal role of caregiver education and support, sharing insights and resources to help tailor care plans and manage the unique behaviors associated with dementia.

It underscores the significant impact of caregivers' well-being on their role and champions the importance of cherishing daily moments amidst memory loss challenges.

Highlighting the transformative power of a positive caregiving mindset, the episode also showcases the educational workshops by Lizette Cloete of DementiaCaregivingMadeEasy.com.

It's a call to action for investing in caregiver support and education.

Listeners are encouraged to reach out, connect, and amplify the support for their invaluable efforts in this field.

Listen to the episode on the player above, click here to download the episode and take it with you or listen anywhere you normally listen to podcasts.

Transcript

Exciting Bonus Episode after Thanksgiving

[0:00] Oh, my goodness. I am so excited for this bonus episode that we are putting in on Friday, the day after Thanksgiving, Black Friday, to coincide with the providential release, of a podcast that I was a guest on recently, which actually was dropped dropped the day after my podcast, Dementia Caregiving for Families, was actually launched.

And so, I wanted to share this episode with you as a bonus.

It is a fantastic episode.

I... It was an audio episode only, and I can hear in the interview with my good friend, Betsy Worzel, from Passionate Talk Radio.

And chatting with Betsy how passionate I am about helping family members who are helping somebody with dementia.

So I hope that you enjoyed this bonus episode on the day after Thanksgiving.

[1:14] Music.

[1:14] And I will see you guys soon.

Hey there, success seeker, welcome to Dementia Caregiving for Families.

Do you feel overwhelmed with the daily struggle?

[1:29] Music.

Unraveling the Mystery of Dementia Caregiving

[1:38] The skills to simplify caregiving. We unravel the mystery of dementia and guide you through the often difficult behaviors.

I'm Lizette, 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.

Hello everyone, this is Betsy Wurzel, your host of Chatting with Betsy and Passionate World Talk Radio, a subsidiary of Global Media Network, LLC, passionate World Talk Radio's mantra is to educate, enlighten, and entertain.

Folks, next month, well, by the time this airs, it will be November, and November is National Caregiving Month.

We recognize caregivers, all different kinds of caregivers, and I have a very special guest on with me today.

Lizette Cloutier was on three years ago which I'll go by fast.

[3:01] Lizette Gluta is an occupational therapist. She's now a caregiver for her parents.

She is a dementia education coach and she is going to be starting a podcast so much going on called Dementia Caregiving for Christians which will be on various platforms.

Introducing Lizette, Dementia Care Specialist

[3:24] Lizette is a Dementia Care Specialist and she has a website that it's going to be in the blog folks I really want you to look at it, DementiaCareMadeEasy.com. Lizette has a lot of things that are going to be going on. She does free workshops.

She's going to be doing a lot in her community and I am I'm so excited to have you on again, Lisette, so welcome back to Chatting with Betsy.

Thank you, Betsy. It's been, it has been a hot minute since I was on the program the last time about three years ago.

Lots and lots of things have changed.

Yes, yes, you have a lot going on.

And I have to ask you this right off the bat, Lisette, because I know people who have worked in the, you know, in the caregiving industry, you worked as an occupational therapist or whatever, you know, people consulting or dementia specialist.

And when they became caregivers themselves, they had a whole different outlook.

So I was wondering if you've experienced that.

Yes, I definitely have experienced that, and that has been the biggest eye opener for me.

[4:53] About two years ago this December, so it was about three years ago that you and I spoke.

And about two years ago this December, my dad actually got really, really sick and ended up in the hospital, lots of drama, in and out of the hospital twice, in the ICU, at tail end of COVID, you know, just all the drama.

But it threw me from a professional caregiver into a family caregiver mode.

And one of the biggest things that I realized as I was going through this process was how many barriers the health care system, just navigating health care, puts up.

And I know what I'm doing.

I've been in the system so I can speak the language. And I struggled.

I struggled immensely with just dealing with the health care system, the hoops, and the jumping through things.

It took me three years from the first time I suspected that my dad actually was having difficulty with his own thinking processes to actually getting a diagnosis. It took me three years.

Three years to get a diagnosis.

The Struggle to Get a Diagnosis

[6:11] And so, you know, we get told, time is brain.

[6:16] And it takes us three years to get somebody even diagnosed with something before we can even start to talk about getting them help.

[6:27] So yes, just, you know, dealing with dementia, dealing with cognitive impairment certainly is challenging and has lots of things that we have to navigate.

But I think it is so much more compounded with just the day-to-day dealing with the healthcare system.

That's so true. That is the absolute truth.

Even now, like I would hope by, you know, at this point in time, even three years ago, two years ago that you were mentioning.

[7:05] That doctors, the health care system would have changed, like the attitudes would have been different.

My brother, my older brother, was having memory problems and that was two years ago, two to three years ago, and the doctor's was so arrogant from what my mother was telling me.

Oh he couldn't have dementia it doesn't come on all of a sudden.

Well it didn't come on all of a sudden.

It's been gradual and people were noticing and my brother's saying he's having memory problems.

It's like why don't they believe people?

I don't I don't get it. You know that is a really I don't get it either.

I just last week did a presentation at a senior center, like a senior community center, on the difference between short-term memory deficits and being forgetful.

[8:06] I counseled one of the women who obviously, based on our interactions, I could tell that other people have told her she is having difficulty with her memory.

And it's not it's more than just forgetful and she has actually mentioned it to her doctor and her doctor said there's nothing wrong and the reality of the matter is that research like empirical data research is showing that the first signs of cognitive impairment are subjective cognitive impairment which means I know I'm not thinking right, I know something's wrong, I know I'm not remembering, I know I'm forgetting things, but other people cannot necessarily tell.

The Importance of Early Detection and Intervention

[8:57] And if I were to do a formal cognitive test, it won't show yet.

But that first sign of cognitive impairment happens almost sometimes 10 to 20 years before somebody gets a diagnosis.

So we're losing so much time that we could be doing things differently to be protective of our brain because there are things that we can do, but by the time we get a diagnosis, it's too late to stave off some of the early changes.

And, you know, I'm not a proponent to say that we can cure it with lifestyle and that we won't have these changes.

But I do know for a fact that if we do these things early on, we can make a tremendous difference in slowing it down so that people have a better quality of life.

And ultimately that is what I'm after is giving people the best quality of life that they can have for as long as they can.

But we're losing so much time because doctors don't diagnose this.

[10:15] Yeah. The example I use all the time, you know, and it's kind of a silly example, but our brain is like a Tesla, right?

Or a super expensive car, a very expensive car, and we take our brain, which is a very expensive car, to the Jiffy Lube.

And the Jiffy Lube, love doctors dearly, but doctors are, you know, clearing houses.

They're Jiffy Lube. They're not the specialists. We don't get to see the brain specialist.

We've got to fight, fight, fight, and then by the time we get there, it's a year later.

[10:59] And then, you know, we've lost so much time, but people aren't getting to the right levels of care of help soon enough, early enough that we can actually make some changes.

That is so true, Lizetta. I'm so glad that you said that because time is really of the essence, when it comes to having a dementia diagnosis or getting one.

You know, back in 2010 or even earlier, 2009, when Matt was showing signs.

[11:36] Doctors didn't believe it.

They just, You know, I was told that he's too young, even though his MRI showed global shrinkage.

But yet the company doctor, who never saw a test, suspected that Matt had dementia just by talking to him and what was going on at work.

That was like mind-blowing. And it must be so frustrating because that would be the time to actually get the person the help that they needed that could have not necessarily extended his life span, you know, the number of years of his life, but allowed him earlier on in the process to stay more able to do things so that the whole journey, the whole process is so much easier, both financially, if we can keep people working for even just a few months or six months longer, if we can keep people from needing 24-hour care earlier because we've been able to put some strategies in place earlier on.

[12:53] We can tremendously impact people's lives, like you, like you as the primary person who was helping Matt.

The Stigma and Fear of Cognitive Impairment

[13:01] You would not have burnt out as early because of the changes, because we were able to change the.

[13:11] Trajectory of the process that he was going through, and it just makes me so sad that society, and I understand why, I totally get it, right?

People are afraid of other people knowing that they're having a hard time thinking.

[13:28] But we're not afraid, you know, of as much of a physical disability that you can see, you know.

And people understand somebody has a physical disability, it's not their fault.

They are an amputee, they've had a stroke, whatever, right?

But we can see, we can see what's wrong with that particular person.

But because our thinking processes, I think, house a lot who we are as a person, how you think is who you are, you know, your values, your preferences, your humor, your – the things that make you you and me me are housed in our thinking processes.

And so we don't want people to know that we're having a hard time thinking, whereas we really should be open to squeaking and squawking about it earlier on so that we can get help.

And families, they don't want to notice that somebody they love is having a hard time thinking because it means that I need to change what I'm doing. you.

[14:42] And as a person who's now needing to step into a caregiver role, if you acknowledge as a family member that you know your dad's having a hard time thinking because he was scammed, all of a sudden you realize, well, at some point or another, dad's not going to be able to drive and that's going to impact me.

Because now I get to drive or I have to help with medicine or whatever.

But we're losing precious, precious time, which is extremely sad, because we can't really change people's lives.

Yes, yes, definitely. I mean, I wish there was the education 13 years ago.

People on social media like you, Lisette, talking about it, having programs, educating people.

So there wasn't anything 13 years ago, and I'm really grateful for people like you, Lizette, that are educating people that are out there and saying, you know what, we have to do a better job, you know, we are and helping the caregivers and it is frustrating.

The Frustration of Dismissive Doctors

[15:59] You know, when someone goes to a, what do they call it, a psychoneurologist, you know, they do that intensive testing, that six-hour thing, testing, four to six hours, I think it was, and like Matt took, and that's not the only one, because I've heard this from people who I've interviewed, and then they tell the person, you can't possibly be that bad you didn't try hard enough.

You could have done better. It's terrible. Yeah.

[16:34] Don't even get me going on that. Yeah, that's just... I mean, it floored me, you know, for someone to say that.

Of course, I didn't know 13 years ago what I know now.

[16:48] But I highly recommend people to educate themselves. But if a doctor does not listen to you, then find another doctor who will.

Yes, find another doctor or keep tweaking and squawking. Yes. You have to get help.

You cannot just, you know, three years ago when, like, when my dad got sick, I got access to his health records.

And more than a year before he actually got sick, so I had noticed his changes about three years ago, and he got sick about two years ago.

So I had a little bit of an inkling something was coming, which is why I kind of stopped what I was doing at that point, because intuitively I could see it.

My spidey senses knew, but my brain didn't.

But when I went through his health record, more than a year before he got sick was the first time that it was actually mentioned.

Like the doctor's office asked him, has anybody told you you're having trouble remembering things and he answered yes my daughter and they met they didn't do anything they didn't do anything which means we lost an additional year before I could you know.

[18:05] Finally get him when he got sick was when I was able to kind of jump in and help, you know, take over medication.

He was so sick. I was the evil child. I had to take the car away, you know, and going through that whole process and it and the barriers that were put up related to that was, difficult, you know, it took a good six months for me to go through the whole process of taking the car away, which is not an easy thing to do for anything because it changes your independence, you know. Yes.

[18:40] But that was, you know, it was, it's very frustrating. It's super frustrating.

But people, yes, if, if your doctor is, if you truly feel like you're having a hard time thinking, if your loved one is having a hard time thinking and you know it, because people intuitively really do know somebody's struggling.

We know our, we know our spouses, we know our parents, we know our siblings, we know when somebody's having a hard time.

If the doctor will not listen, you have to make them listen or you need to find another doctor who will listen because losing extensive quality of life by waiting and waiting and waiting and not getting the help you need.

The impact of delayed medical help on quality of life

[19:24] Absolutely. Matt's mom, she also had Alzheimer's, she would tell me, I'm getting like my mother.

Don't tell Matt, I'm getting like my mother. Of course I had to tell Matt.

[19:38] And she did have Alzheimer's.

Then you're talking 23 years ago Lizette, when there wasn't really anything.

You know, how to deal with sundowning, hallucinations. And, you know, this is why I say, and I don't care if I sound redundant to the audience, but I'm telling you folks, from the bottom of my heart, Education makes a difference in the quality of your caregiving. Yes.

Yeah. Well, you opened it up really well for me to kind of tell people what I'm doing right now because I'm very excited about it.

Earlier this year, I stopped working as an occupational therapist.

So I've been an occupational therapist for over 30 years. And my specialty for the last 20 years has been in dementia and dementia caregiving.

So I was a specialist in dementia and dementia caregiving before I turned into the child caregiver of two parents with cognitive impairment.

[20:49] And one of the things that I've realized through this whole process of working with thousands of people over the last 20 years, because, you know, I worked in home health, I worked in acute care, I worked in rehab with these types of people, and there are only two types of caregivers.

The caregiver who comes through this like you, you know, not totally unscathed, but able to function and still be okay on the other end, and the caregiver who totally burns out and is never the same again.

And my hope is to help people to actually come through this process without losing their entire life, you know, their health, their own cognitive wellness, their own relationships with their kids or like me with my husband.

So earlier this year, I was awarded a grant by the South Carolina Area Agency on Aging to develop an innovative educational platform that is longitudinal.

And what that means is like, I want to bring people into my ecosystem early.

[22:07] And for the whole process, because what happens is like Matt's in the hospital, you talk to the therapist or somebody who knows, you know, there, but then you never you never have help again.

Right. So you might have intermittent help one time here, one time there, but you don't have somebody who truly knows how to help you through this process, because, you know, therapists are generalists.

They're not necessarily specialists or doctors. They're generalists, right?

So the purpose behind this program is to start this educational platform, and the goal is that it be accessible anywhere in the world from a cell phone.

Because guess what? That's where we get our information is from the phone.

[22:54] Nobody sits in front of a computer to do education. We're on our phones.

So picking a platform that people can have the education, that they can kind of listen to like a podcast or watch like a podcast on a YouTube video on their phone, but then have the group component where people kind of like a Facebook group, but curated and not just open to anybody and not for what I call the verbal vomit.

But really, Matt's struggling with hallucination, what do I need to do today, right? This is what's going on.

And then a weekly ability to actually come and speak to specialty trained people who are coaches who can help you problem solve what's going on with your particular person in your particular situation.

[23:50] And then building in the resources that they need.

So the program that I've started, when somebody comes to me, say it's you and your son, both of you can be in the group.

I have a group of four siblings that are all together supporting a mom and a dad.

[24:10] So one person purchases the program, but then the whole care circle can join.

So everybody has the same information, which means they can all help one another and the burden is not just on one person.

So that's the big task that I'm working on right now is to develop that platform and to build it out for family caregivers so that they don't have to do this alone.

That is so important. pen.

[24:46] Find the help and the structure they need. One of the other big differences between successful caregivers and unsuccessful caregivers are the successful caregivers acknowledge something's wrong, they see something's wrong, and then they start to actually plan and make a road map for themselves so that they have a way through it.

The problem is they don't have the information to make that road map.

So what we do in the program is help people make their road map so that they have a plan that they're following.

Yes, kind of like a GPS, sometimes you have to tweak, right?

There's a road block, you've got to go around, you've got to detour.

But if you have a plan, it's better than not having a plan at all and just kind of going wherever the wind blows.

And then the third big part of this program is, you know, you know, having dealt through this process with Matt, that we have what we, society calls challenging behaviors, right?

[25:58] Like sundowning you mentioned and hallucinating and things like that.

Well, the more I work with people, the more I realize that we, I mean the people around them, not for all of the different ones, hallucinating can be a little different because that's truly like brain changes, right?

But for a lot of the behavior that we call challenging, we cause it, not them.

[26:30] We, the people around me. I did that with my mom, not knowing because I didn't recognize her changes early on.

I would say to her things like, but you told me that.

But mom, you've already told me that story today. And I caused her anxiety, like so much anxiety.

And then when it started happening to my dad, I realized, oh, and I never like when my dad was sick, and they stayed with us.

Every single day we had the same exact same conversation four or five times and not one single time did I tell him, but dad you've already told me that, don't you remember you told me that.

And the difference, the marked difference between my mom who has anxiety about the fact that she's losing her memory and my dad who has no anxiety about it at all is so different because they didn't change, but I did.

And so part of the program that I've developed is a repeatable way for people to recognize what they're doing to make these challenging behaviors.

Because it's a pattern, and it's a very repeatable pattern.

But if you don't know it, you don't know where you need to change.

[27:57] Because you would agree, right, that we – Oh, yes.

Oh, that's so true. You would agree, you know, with with Matt, there are certain things that that happened over and over and over again.

And, you know, sometimes it's like, well, if I just even have a recipe to look at this and say, oh, well.

These could be the possible things that I can change because, you know, right. Matt couldn't change, he had to change.

Yes, yes, that's very true.

And I wish I knew all that with my mother-in-law. I really do that.

Yeah, that's why I keep saying this folks. I can't talk anymore.

[28:48] Education makes such a huge huge difference in the quality of your life and the life of your loved one to know what behaviors to expect to know how to deal with it you know of course what we don't know we don't know at the time and, you know I didn't handle my mother-in-law's son downing of hallucinations well because I didn't know what to do but I knew with Matt what to do and it made such a difference and I wish how I wish there were people like you Lizette around to help me and that's one of the reasons why I do this show because I want people to know there's help out there there's resources like you that it helped them to have a better quality of life with their loved one for the loved one to have a better quality of life and it's so important.

This is really a passion of mine for people to know that there is help and it's so important to get it.

Importance of Seeking Help for Caregivers

[29:59] Yes, for sure. Very, very important because I'll tell you folks.

[30:05] I say it all the time, it's by the grace of God I'm sitting here today in one piece because burnout, yes, and I think a lot of caregivers, they don't know how to get out of their own way. It's not about.

[30:22] Then your loved one can't change. It's hard for caregivers to accept that.

They have to change. I had to change. I had to change my outlook.

[30:34] But without somebody actually helping you recognize that, it's almost impossible for a caregiver to see it by themselves.

Like for example, in the coaching calls that I do with the members of my community, one of the members of the community, her mom is at a point where she is still living an independent living, but she's starting to recognize that she's having a hard time remembering.

Almost one foot needs to be in assisted living, but she's not quite there yet.

But her mom has started to imagine or talk about her mother.

And so my client, the group member, mentioned that her mom can self-correct, and then when her mom self-corrects, she says certain things to her mom.

And I pointed out to her, I'm like, I would like you to try to do something a little bit differently when your mom starts to talk about her mom or your grandma, start asking her questions, start trying to find out in your mom where her brain is, instead of just saying, oh, don't worry about it, mom, don't worry about it, because that's what she keeps telling her.

And I'm like, it would be helpful. And she's like, but why?

[32:01] And I said to her, because I'm not really doing it so much for your mom right now, but I'm training you.

Because right now your mom can self-correct, so when you tell her, don't worry about it, she's able to self-correct.

[32:15] But six months from now, she might not be able to self-correct, and then you've repetitively told her not to worry about it, but at the same time she is.

And now that's what's stuck in her mom's brain.

And so I'm like, I'm not training so much your mom, I'm training you what to do so that you don't make certain mistakes later on that I can see, because I know what this is going to do over time that you have no way of knowing because you've never done it before.

Like I've seen thousands, like thousands of patients over 30 years, thousands, like I cannot tell how many thousands.

And of that, because I specialize in dementia, I've seen thousands of dementia patients at various different stages of their disease process, of this process.

And, you know, you, my client, have maybe seen one or two.

[33:17] So finding a – and it doesn't need to be me.

The information is out there. The idea behind programs like this is to make it easy for you to find the information, to save your time so that you're not just endlessly sitting online trying to figure out for yourself what you need to know about your specific person because if you have somebody who's a professional, a dementia specialist like me, there are other people out there, but if you have somebody who can walk with you, they've already seen this thousands of times.

And they can tell you what to do to make it easier for you, because it doesn't need to be devastating.

[34:07] You know, death sucks. You know, you mentioned earlier on when you and I were talking about the death doula that you spoke with.

Death sucks, right? Doesn't matter who we are, whether we die of cancer, whether we up and die in a car accident, you know, death is not easy for anybody.

But it doesn't need to devastate us going through this process if there are easier ways to do it.

But so many people don't know that it doesn't need to be this hard, that you can come through this intact, that you can still come through this with your health.

[34:49] Don't waste your time just endlessly looking online for the information that somebody else has pulled together, you know, with resources of you can do this, you can do this, you can find this here.

Like you know in speaking to everybody that you do on your podcast how many different resources there are out there.

Well, if every single person has to sit and go research that by themselves, you don't have enough time. I don't have enough time.

So find a place where it's curated for you so that you can easily stop wasting your time and effort just trying to figure out what you need to know.

Seek Expertise and Curated Resources for Caregiving Support

[35:35] Go to somebody who actually knows what they're doing.

Absolutely, and I've said this before, Lizette, and I'll say it again, me personally, I would rather go to someone who has the experience and especially personal caregiving experience because there is a difference.

[35:56] There is definitely a difference in that person's demeanor and how they think and how they will.

[36:10] Their approach is much different that they have also had personal caregiving experiences because, then they they really know how you feel and what you're going through because they have also gone through it instead of just you know book knowledge.

Learning about it yeah. Yes yeah that that is for sure it's so important and you know I I did belong to many different support groups over the years and they're it's such a shame that some Facebook groups do not allow links or education in their groups and I don't know why I have a group for if you don't believe in education, but these people ask the same questions over and over again.

Why is my mother or father pooping in their pants? Why can't they use the bathroom?

Because they don't remember how. Like they don't know that this was part of the package of dementia. Why are they seeing dead people?

And then they tell their relative, oh no they've been dead for years, stop talking about them.

And they just aggravate their loved one and it can escalate folks if you don't know how to handle behaviors I'm telling you I saw it first hand with my mother-in-law it.

[37:31] Can escalate into a not pleasant situation I know that very hand so educate yourself I can't say it enough it's so important you know when and it's really bizarre the different hallucinations but when Matt was starting to see his deceased relatives.

Sidestepping Arguments and Emotional Sensitivity

[37:53] Could someone tell me, Betsy, you know, ask about, you know, what Matt, what they were wearing and how their visit went.

So I did. I said, oh, Matt, because he would say his dad came to see him.

I go, really? How's your dad doing?

Oh, he's doing good. Great. Tell Don, I said, hi, the next time you see him.

Yep. And you stopped the loop.

Right. You stopped the loop because what would have happened?

Hey, Betsy, I saw my dad. Oh, no, you didn't.

Yes, I did. I saw my dad.

[38:29] No, Matt, you didn't see your dad. And what do we have immediately? Woosh.

We have an argument and we have Matt riled up. And then you're upset because he's riled up and now everybody is, you know, people with dementia, um, are very sensitive to other people's emotions.

I call them like an emotional sponge.

[38:51] So just by how you changed your interaction with him, you totally sidestepped this whole terrible argument of the reality that, you know, no, your dad's not here.

But you were able to help Matt in the moment and ultimately help yourself because now we're not fighting one another and he's riled up and now you've got to get him to go take a shower or go to the bathroom.

You know, and so people don't understand that if they take the time to actually learn these skills before, you know, when they need them or even long before they need them, they will save themselves so much time and aggravation over the years that they're dealing with this because it's going to keep coming.

These changes are going to keep coming. So learning how you can stop that loop before it starts meant that you actually could still make good memories together as part of a process as it was.

You could still have a limited conversation, but you could still find joy in your relationship because you're not constantly fighting.

[40:14] Yes. Yeah, that's true. And you know what the big thing and I tell caregivers this, I know it's hard to accept.

It's hard to accept your loved ones changing.

And I tell people you have to accept what's going on. You don't have to like it. Nobody likes it.

Acceptance and Readjustment in Caregiving

[40:32] But you have to accept it and readjust or you're going to drive yourself bonkers and make yourself sick. And there's no reason for it.

[40:41] Right. And like you pointed out right there, you know, the difference between a successful caregiver and a not successful caregiver is that level of readiness.

[40:51] No, I don't have to like it. I don't like that. I have to take my mom and dad every place.

I don't like that. I have to go pick up their medicine this afternoon again because the pharmacy wasn't ready on Saturday.

I don't like any of that stuff. But I've got two choices, right?

I can get aggravated with the situation or I can just accept it and live within the constraints and not make things worse by my own emotional response to the problem.

Mindset, like our own way of thinking about our caregiving journey significantly changes the outcome.

When my dad was super sick and I was spun out of control, like overwhelmed and angry and everything, it was because I was thinking, oh, woe is me. My life has changed.

Nothing's ever going to be the same again. I don't have time for this.

What do you mean I've got to take them to the doctor? I had all of those thoughts and negative emotions, which put me in the toilet, you know, quite frankly.

And that's when I'm like, Lizette, this is no fun way to live.

Like, what are you doing? And from that moment where I actually made a decision, like I remember making the decision, Yes, I don't like this, but I can choose how I respond and I choose to be a caregiver.

[42:20] I choose to be ready for this because ready or not, it's going to come.

[42:25] From the moment I made that decision, and I started to plan ahead for the journey, my life changed, and I don't feel overwhelmed.

I don't feel stressed. I don't get angry.

You know, I'm human. I make mistakes. Some days I get aggravated and frustrated.

But my own mindset and your mindset as a caregiver dictates how your journey is going to be.

Absolutely. If you think it's going to be terrible, it will be.

If you think it's going to just be doom and gloom, it will be.

There are active things people can do to make it easier for themselves.

But nobody's talking about that.

Nobody's talking about how our own mind controls how we respond to a caregiving journey.

Passionate Perspectives on Caregiving and Alzheimer's

[43:24] You got a little passionate today. I love it. I love people that are passionate. It's true.

You gave true golden nuggets, and I like for someone else to say it because people might get tired of hearing me say the same things all the time.

So when I say, you know, hear from someone else in a different way, I hope they understand, they get it.

It's a mindset, folks. It is a mindset. It is a mindset.

[43:53] And, you know, determined. You choose your caregiving journey.

Yeah. Yes. I wasn't going to let it defeat me, and, you know, that's how I...

You know, thought of the name of the group hashtag kick Alzheimer's F movement because how do you kick it?

You got to celebrate life everyday folks live life Take your loved one out as much as you can do the things that you can't doesn't matter if they remember or not Bring the party home because you do, Right you do you make in the memory member?

Yeah, exactly making the memories for you. You're not making the memories necessarily for them You're making them, you're still living your life and as sucky as it is for the people who are dealing with dementia, it is now a part of their life.

And so they can choose to just see the negative and the loss or they can choose to still see what's retained and what's still there and play to that strength.

My mom, right now, she has her short-term memories a nanosecond.

Cherishing Moments with Mom on Her Own Planet

[45:09] But she is super, super pleasant. Super pleasant.

And she'll sit there and she'll tell me, she'll laugh, she'll say, I'm on my own planet. I'm like, yeah, mom, I love your planet.

Because these are the memories that I can make with my mom. You know, and so it's not about making her remember tomorrow that we had that same conversation. It's irrelevant.

I see the joy in her eyes when I connect with her at whatever level she is, at whatever time of day it is.

It doesn't matter to me, you know, I'm there to help support her and have her, give her the best quality of life that I can still give her at whatever part of this journey she's on.

Absolutely, I absolutely agree, Lizette.

And folks, I'm going to recommend, you know what, take pictures, take videos, record your loved one's voice, because you're going to really treasure that after they're gone.

[46:20] I went through a lot of turmoil as a caregiver. One time I was, I said something to Matt, was it nice?

Like, you know, I can't get out early because I got to do this and this for you and I caught myself.

I got upset with myself and I apologized to Matt later and then I had epiphany.

Betsy you're going to get your independence one day. Matt's never going to get his independence and and I apologized to him.

You know I was crying. I was really upset with myself and you know folks no one's a perfect caregiver.

Show yourself love and grace, compassion where you do make that mistake. Oh, for sure.

Because you're going to make mistakes, let me tell you. Oh, yeah, for sure.

And even me, like I'm a professional caregiver and now I'm a family caregiver.

The Challenge of Taking Away Driving Privileges

[47:13] When things were going really hard with my dad, like during the period of time when Lovette had to take the car away, right? Because that's no fun for anybody.

But the reality is, you know, And this is just the reality of the matter is driving is a privilege, it's not a right. We do not have a right to drive a car.

And so if your loved one is not safe driving the car, you have a responsibility to other people on the road of recognizing it and taking on the challenge, because people don't want to, because it changes your life as a caregiver, because all of a sudden you get to assume the responsibility of errands and going places.

So I understand that, but when we were fighting, when my dad and I were fighting, I came to a realization, like, Our interactions had one of two responses, and the responses were always resultant of me and my response, my first response.

And on the days that I would just go into the house and not think about it beforehand that my dad is not the same anymore, and that he is going to push my buttons because he's pissed, excuse me, about the car.

[48:27] Then we ended up in a fight.

But if I sat in the car for three minutes before I'd walk through the door and I had an attitude adjustment, and I came in with a different way, and knowing that he was going to try to push my buttons and not respond, then we had a totally different outcome every single time, every time.

So in other words what you know I realized and I knew it as a professional caregiver but it's harder when you're a personal caregiver right?

But what I realized is yes I control the narrative.

I control the response I'm going to get on that end.

I control how my dad's going to experience this interaction because he cannot control it anymore.

But I can.

[49:18] That is so true. Lizette, I could talk to you for hours and hours.

You are so wonderful and I really want to encourage the audience to check out your website.

Give your website again, Lizette, and how people could get in touch with you.

Wonderful. So the best place to reach me right now is It's dementiacaregivingmadeeasy.com, and forward slash workshop. I do a free monthly workshop to help caregivers be able to start down this process a better way.

So once a month I do a workshop, maybe sometimes a couple of times a month.

But DementiaCaregivingMadeEasy.com, is the primary site, and then DementiaCaregivingMadeEasy.com, to

[50:15] Sign up for the next free workshop where people can learn how ready they are.

Free Workshop: Assessing Readiness for Caregiving

[50:19] They can find out completely how ready they are for caregiving.

They can get a roadmap that will help them have a clear path to follow.

And I show them a repeatable way to stop challenging behaviors.

So those three things are the things that people can come away from the free workshop with.

[50:40] Wow. That is amazing, folks. This may not be the proper way to say above from New Jersey. That's a no-brainer.

How I wish there was workshops, free workshops 13 years ago because I would have jumped on it.

I would have jumped right on that offer. I am so grateful for you Lizette and grateful for people like you that you know you have a business but you offer free workshops and helping people out and you know folks think about how much do you pay for your streaming services I, know I pay a lot yeah how about putting that money to a good use and joining a membership and learning how to get support, learning how to have a better caregiving journey.

Now I'm not selling anything for Lizette, she's not telling me to say this, but this is how strong I feel about for a caregiver to get education and support.

You know, I hear caregivers complain, oh well they charge for this, they charge for that, but don't you pay for things?

Don't you pay for services, when you get your nails done, your hair done, whatever, then how about paying for something that will help you and your loved one have a better life?

[52:06] Yes. And I will tell you, Betsy, the biggest thing that I have noticed regarding, like, you nailed the head, you nailed it on the head.

People who are not willing to invest, and these programs, the programs that are worth it are not free, but they're not so expensive that they're not doable.

Most of these type of programs have a cost point of about less than $100 dollars a month like that's a meal in a restaurant for two people yeah not even a fancy restaurant for two people that is a streaming that is a streaming platform you know I pay 80 bucks for Hulu per month right streaming platform what is one month one month in a nursing home cost depending on where you are in the country, $8,000 to $10,000 a.

The Cost of Nursing Home Care vs. Paid Programs

[53:06] Month.

So the takeaway I have for people is if you are not willing to invest in yourself to find out the information that you need in order to do this, then you're doing yourself a significant disservice because the people who actually pay are the people who play.

They're the people who show up. They're the people who ask questions.

They're the people who are invested in themselves.

The people who are looking for everything for free, they are the people that are not willing to make those changes.

[53:44] So if you really want, you know, I pay a lot of money to a lot of different places for when I want information.

I have, you know, I've spent thousands, probably $100,000 in my career learning, about dementia and dementia caregiving and those kinds of things.

Between time and effort, think how much money people can save by not wasting all their time just endlessly searching and not then having, not knowing whether the information is accurate for them, and one month, one month in a nursing home.

You could be in a paid program for the entire lifetime of your person that you're helping and not get to one month in a nursing home.

[54:41] That's very true Lizette and you know I tell people like when they say oh well I don't have time to listen to this or do this or do that I'm like you know what if you can binge watch your shows Netflix that you were you're not going to learn anything then you can definitely listen to people who have, wonderful advice, and go to a workshop.

Right, but the reality of the matter is they are going to make time.

[55:18] Yeah. They are going to spend the time.

They can just choose do they want to spend the time on their own terms, or are they going to spend the time when the papaya hits the fan and they've got to navigate it?

Because you're going to spend the time. When something happens and your loved one's in the hospital, you're frantically trying to figure out what to do, you're going to spend the time then or you can spend the time ahead of time and get people in your life and put your system in place and get everything ready so that when the crisis happens, you're not scrambling.

Because we are going to pay, we're going to pay in time and money.

We can just choose when we're going to put the investment forth.

Take Action: Get Help Early and Often

[56:07] And investing in yourself as a caregiver is an investment in your future because.

[56:16] About 66% of caregivers are women, and of those 60%, 60-60%, about.

[56:25] 60% of those are still working.

So we're going to put the time in. We can just choose. We can choose when are we going to put the time in.

But if you don't make the choice actively, the process is going to make the choice for you when you don't have the time, when you truly don't.

And that's when people burn out.

So my final recommendation to people is don't wait to get help.

You've got to get help early and often and ask.

Don't just wait. There's so much you can do to actually make this process easy.

But we are not talking about making it easy.

We're just reacting after things happen. And we can, if people are proactive, they can actually change the outcome so they don't have diabetes or heart conditions or a stroke because of high blood pressure because of dealing with a caregiving journey without putting, you know, some thought to it.

We can significantly change people's lives. Absolutely.

Can you repeat that? Lizette was trying to write it. Don't wait to get help. I like that.

Don't wait to get help. Yeah. You can change the trajectory of your caregiving journey by just getting help early and often.

[57:50] Great. I'm going to put that down because that is so true. Lizette, you are a gem.

You are a true gem. Folks, you heard Lizette Cloutier, but her name is spelled C-L-O-E-T-E.

I hope.

[58:06] I said your last name correct. You did. You did good.

Great. Thanks. Folks, information about Lizette Cloutier will be in the blog that Jeanne White who's the station manager writes. Please read the blog.

Contact Lizette Cloutier.

Cluta and get the resources get the help that you need it it's so important um and I'm really, feel blessed to be able to do what I do because I'm here to help people that's what chatting with Betsy is about is helping people so uh please share this show to help others and if If you don't already subscribe to Chatting with Betsy, please do so.

It's for free on Amazon Music, Spotify, Spreaker, YouTube, to name a few.

And I want to thank you, Lizette, for coming on and all that you do to help others.

You've inspired me today and giving you a hug across the waves.

And I want to thank Lillian. You're welcome. I want to thank Lillian Caldwell, CEO of Passion World Talk Radio, who makes this all possible.

And folks, if you want to follow me, I'm Betsy E. Wurzel, W-U-R-Z-E-L on Facebook, and, I have a support group.

Join the Kick Alzheimer's F Movement on Facebook

[59:31] Hashtag Kick Alzheimer's F Movement on Facebook. You're welcome to join.

And I I forgot to say at the beginning of the show, so I'll say it now.

The views of the guests may not represent those of the host of the station.

Got to do my disclaimer somewhere in the show.

So, still in the beginning, I did it at the end.

But Lizette was on point, great information.

I'll tell you, I'm excited. If I was a caregiver now for someone with dementia, I would definitely be hopping onto that.

Free workshop and checking it out. And that's a great way to check out Luzette.

Right? Yep. That's a good way to get to know me. Yes, do the free workshop and then you could see.

But I'll tell you what, I've known Luzette for what, three years?

You won't be disappointed, folks. I'm telling you, you will not be disappointed.

[1:00:28] You will really enjoy and be very wise to listen to what Rosette has to say she has over 30 years experience and I would just think it's a very wise investment.

And as I always say at the end of my show, in a world where you could be anything, to please be kind and shine your light bright because we all need that now more than ever.

And thanks for listening everyone.

This is Betsy Wurzel, your host of Chatting with Betsy on Passion Rule Talk Radio Network, which is a subsidiary of Global Media Network, LLC.

[1:01:16] Chat with you soon. Bye bye now. 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.

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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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