FIND OUT EXACTLY HOW YOU ARE DOING AS A DEMENTIA CAREGIVER

TAKE ASSESSMENT

Have you ever wondered about the impact of media on dementia caregiving? This episode sheds light on this topic, offering a fresh perspective on how digital platforms can aid caregivers of individuals with dementia.

Lance A. Slatton is the host of the Award-Winning podcast & YouTube show All Home Care Matters. He is also a senior case manager at Enriched Life Home Care Services in Livonia, MI. Lance was also named a 50 under 50 for 2023.

By subscribing to the show, you will gain access to a wealth of information and tips that can help you provide the best possible care for your loved one. Find it on Apple podcasts or YouTube at @AllHomeCareMatters or visit the Official Website at https://www.allhomecarematters.com

The Award Winning All Home Care Matters is the Nation’s Leading Voice in Long-Term Care. 

All Home Care Matters is a multiple award winning podcast and YouTube show devoted to helping families, caregivers, and their loved ones navigate long-term care issues.

0:01:27 Introducing Lance A. Slatoon and All Home Care Matters
0:04:58 Dementia Education and Advocacy by All Home Care Matters
0:11:22 Privacy concerns in sharing videos of dementia patients
0:14:04 The ethical dilemma of sharing dementia-related videos on social media
0:16:00 The show's resonance during COVID and beyond
0:19:05 Diagnosis and adios: the frustration with healthcare system's response to dementia
0:21:40 Navigating the Challenges of Dementia Diagnosis and Management
0:23:50 The Difficulty of Addressing Dementia in Children
0:28:02 The Importance of Recognizing Family Caregivers
0:30:24 The Denial and Identification of Family Caregivers
0:32:20 The Dilemma of Driving with Dementia
0:34:32 Challenges in Making the Decision to Stop Driving
0:35:01 The Challenge of Taking Away Driving Privileges
0:37:55 Pouring Heart and Soul into Serving Success Seekers

In an era where the COVID-19 pandemic limited physical gatherings, one individual saw an opportunity to create a digital space for caregivers. This platform, initially intended as a temporary solution, blossomed into a vital resource for those seeking guidance and companionship in their caregiving journey. It demonstrates the power of adaptability and innovation in facing unexpected challenges.

A Focus on Dementia Care

Dementia caregiving is a path filled with love, challenges, and the need for ample knowledge. This episode highlights the importance of addressing various aspects of dementia care, from early-stage support to navigating complex ethical dilemmas. By collaborating with experts and sharing real-life stories, the platform offers a well-rounded education to its audience, making the caregiving journey a bit less daunting.

Navigating Social Media and Ethics

An intriguing part of the conversation revolves around the ethical considerations of sharing content related to individuals with dementia on social media. The discussion brings to light the fine line between raising awareness and ensuring the dignity and privacy of those affected by dementia.

You Are Not Alone

One of the most powerful messages from the podcast is the reminder that caregivers are not alone. The path of caregiving, especially for dementia, can feel isolating. However, support groups, both physical and virtual, offer a sense of community and understanding that is invaluable. This solidarity is a beacon of hope and strength for many.

The Challenge of Driving with Dementia

The episode also delves into the sensitive topic of driving with dementia. Deciding when it's time for a loved one to stop driving is complex, intertwining safety with the desire for independence. The episode provides practical advice and emotional support for navigating these waters, underscoring the importance of compassion and clear communication.

Children and Dementia

An often overlooked aspect of dementia is its impact on children, whether they are caregivers or diagnosed themselves. The episode brings attention to this significant issue, highlighting the unique challenges and emotional toll it takes on families.

Conclusion

This episode is a testament to the power of media in supporting and educating dementia caregivers. It offers a blend of practical advice, ethical considerations, and emotional support, all while fostering a community of understanding and care.

Remember, in the world of dementia caregiving, you are never alone.

Read More:

Talking About Caregiver Burnout With Michelle Gordon

Check the other podcast: https://www.thinkdifferentdementia.com/category/podcast/

Listen to Podcast

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If you feel like dementia caregiving is hard and unpredictable and you are struggling to help a spouse or a parent living with dementia, join our next free workshop.
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What is All Home Care Matters With Lance Slatton

Transcript

Interview with Lance A. Slatton from All Home Care Matters

[0:00] I just had a lovely interview with Lance A. Slatton from All Home Care Matters, which is a large YouTube site related to All Home Care Matters.

I would love for you to listen to today's episode and you won't expect where some of the conversation went.

So go ahead, check it out.

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

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

Introducing Lance A. Slatoon and All Home Care Matters

[1:27] Well, welcome back to today's episode of Dementia Caregiving for Families.

And I am very, very excited.

I have a new friend that I met recently by the name of Lance, who is a host of a program called All Home Care Matters.

And I wanted to bring him on to have him tell us a little bit more about the program as well as how it can help family caregivers of people living with dementia.

So, Lance, welcome to today's program. How about you start by telling me a little bit about All Home Care Matters? Sure.

Well, thank you so much, Lizette, for the invitation to be a guest on the show. I appreciate it.

All Home Care Matters started really as just a temporary stopgap, if you will, at the very beginning, early months and stages of COVID, our company had done a lot of involvement in our communities throughout Southeast for Michigan through caregiver support groups, educational talks, dementia educational seminars to New Year's Eve parties, fun games, sing-alongs, things like that.

And we started seeing the writing on the wall, if you will, where a lot of these facilities.

[2:39] In community centers, their attendance started dwindling. Things weren't closed down yet.

So we were kind of, you know, being proactive and saying, you know what, something's happening.

We might get shut down soon. We don't know what the future holds.

And I actually was out at the track doing some exercising after my kids went to bed one night and pulled up a podcast because I like to, you know, listen and learn rather than music. music, and I heard a podcast.

And at that point, I'm kind of embarrassed to say I didn't really even understand what podcasts were or what their purposes are.

At the time, I literally thought, you know, like your different news stations, sports stations, and, you know, broadcast stations, I thought a podcast was they were taking the audio of their programming and just sending it out so you could listen to the show rather than watch the show.

And obviously, I quickly learned that podcasts are so much more than that.

So as a result of hearing that podcast that evening, I went home, told my wife, I said, you know what, since all of our community events are, we're going to kind of put a hold on them for two weeks or so, what we all thought at the time, right?

[3:48] Let's start a podcast. And she says, well, what do you know about that?

I said, absolutely nothing.

[3:53] So the first thing we did was spent some serious time researching researching and looking into the space. Okay.

Is it over, you know, overfilled with all these different options for, you know, healthcare, senior care, dementia, caregiving podcast.

[4:08] That would it be worthwhile pursuing it?

And we quickly found right away. Yeah, there's definitely space.

You know, I don't know what the statistic is right now off the top of my head, but one of the famous statistics are that, you know, there's, let's say a million podcasts, but out of that that million, less than like three quarter of them are actually active, meaning they post at least once a month.

And so we thought, okay, we could do this.

And I took some classes and some training and things just to learn how to properly do it and educate myself.

And we launched it with just a temporary mindset.

And then those couple of weeks, things were going to be shut down, turned into two, three years, you know, and here we are today going strong and just, it's really evolved into something we had never expected or anticipated.

Dementia Education and Advocacy by All Home Care Matters

[4:58] Wow. What a great story. Um, so, I know when you and I spoke earlier, we talked a little bit about dementia and dementia caregiving.

And I know that All Home Care Matters does a lot of education related to dementia.

Can you speak on that a little bit more?

Yeah, absolutely. So first we named the show All Home Care Matters because, as I mentioned, our family owns a home care company here in Michigan.

[5:25] And home care is more than just taking care of a senior who needs some companionship.

Right. You know, we have issues ranging from, you know, ALS to, you know, stroke survivors to Parkinson's to advanced dementia, early stage dementia to, you know, young adults who maybe unfortunately got into a horrific car accident or had an injury where they're now suffering from a TBI, a traumatic brain injury.

So we want to say all home care matters, meaning we want to talk about everything that we encounter on a day-to-day basis. You know, and dementia being one of the more prevalent common instances that we deal with.

And so, you know, we've worked with some of the, you know, worldwide leading dementia thought leaders, educators, difference makers.

And one of the episodes that is one of my personal favorites, though there are many, one that I'm personally most passionate about is we did a whole panel from almost every continent was a guest joining this discussion was the ethics of dementia. dementia and social media.

[6:32] And I can elaborate on what that is, but yeah. So, you know, and this would be good for your viewers and listeners.

If you reach out to, you know, Google meta, who owns, you know, Facebook and Instagram or, you know, X slash Twitter or, you know, any of these social media forums, I'm sure your viewers and listeners have either seen it or know of somebody who has, where you're having healthcare professionals or store retail clerks, where they might see somebody or they're dealing with somebody with dementia or a cognitive issue and the person is not being shown in their best light.

Some of it is even like they're being assaulted or, you know, just having, you know, some type of situation.

[7:13] Next thing you know, that's being broadcast across social media platforms everywhere.

Yeah. My issue was where is the policies and protections for these adults who may not be of competent, sound mind or of the ability to make their own decisions decisions to give their consent to have these images, videos, and audios shared on social media without their consent.

We actually conducted a LinkedIn quasi-professional survey across LinkedIn.

[7:44] And the results were kind of interesting. And a lot of the respondents, it was almost contradictory.

You know, half of them would say, it's fine. We don't see anything wrong with it if it's helpful.

The other half said, whether it's helpful or hurtful, if that person doesn't give consent, they shouldn't be able to post it. Oh, I agree with that. Yeah.

And then a further question, though, was, you know, kind of phrased a little bit differently, but still with the mindset of, should you ever have things shared on social media if it's to the benefit of other people living or dealing with a loved one with dementia?

And it was like 98% said yes. So they're kind of contradicting, you know, it's just very interesting, which provides that very gray area and presents the issue with, you know, how do we protect these people?

And so one of the guests, one of the panelists was actually, she was a medical doctor doctor in the UK.

[8:42] Her name is Dr. Jennifer Butte and just the most lovely lady you could ever hope to meet.

And she's still advocating and educating, but she stepped down from medical practice and, you know, she is living with dementia and she was one of the panelists.

And, you know, it was just a very poignant, you know, comment she made where she said, look, is anyone else here on the panel diagnosed and living with dementia?

Well, she was the only one. Right. He says, I believe I'm the only one.

And I'm here to tell you, I would never want my image likeness, video pictures, anything directed or, you know, contributed to me to ever be shared on the Internet unless I am able to give the blessing for it.

And I think at the end of the day, that's how I feel as well.

Even if it could be helpful to other people, it could be helpful to other people, but at the expense of that person that's doing the helping.

And so we actually reached out to all of the major platforms, Meta and LinkedIn, I believe, Google, and just asked them, what is your policy? Because.

[9:47] Anybody that posts content on, you know, Facebook, YouTube, there's all these, you know, especially YouTube.

Does this video include children?

Does this video present, you know, and they have a whole list.

Right. But there's not that option.

Is this person providing consent for this to be shared?

Or do they even have cognitive impairment to be able to give consent?

Right. Did you know that caring for a person with dementia doesn't have to be this hard?

If you are struggling and you would like to join our next free workshop, the topic of the workshop is three tips how to avoid challenging dementia behaviors without stress, anxiety, or burnout.

I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know after attending this free workshop.

If you'd like to register, message me the word workshop.

[10:59] On Instagram or check out the link in the show notes below.

And so that, you know, we were hoping we didn't get a response, but I do feel like that particular episode, that was something I had actually came to the conclusion a long time ago.

I really wanted to try to get to the crux of it. And is there a definitive answer?

Privacy concerns in sharing videos of dementia patients

[11:22] I don't know that there is, you know, because somebody might be competent right now living with dementia and maybe they they have a bad day tomorrow and they say, get that off there. But yesterday you said it was okay.

So I don't know that there is a solution at this moment.

I personally believe though, unless the person is deemed competent and able to make decisions for themselves and provide informed consent, that it should never be shared.

But we see it all the time. And most of them, unfortunately, are very horrific and just very upsetting videos of workers in a facility.

You know just well the worker in a facility should never be posting anything on social media about a patient right absolutely you got HIPAA and everything else and but unfortunately they do and the sad thing is most likely the family or anybody connected to that individual they're not going to be connected to that care worker or who that person so they would probably never even know it is on the internet um so that that that that's one of my most passionate topics But we've had some wonderful leaders in the dementia community with the president, I guess that's the correct terminology, of the Wicking Institute for Dementia Education and Research.

He was on, you know, we've had some wonderful, wonderful, just amazing people who have dedicated their lives to educating others and raising awareness to the issue of dementia.

[12:48] I actually am going to circle back to the whole social media thing because this is a conversation I haven't necessarily had.

[12:58] Been thinking about, but it's really, I'm very glad that you brought it up because I see a couple of different levels of challenges related to social media and people living with dementia.

You mentioned the person who consents one day, they see the video, whatever, and they consent that day.

And then the next day they're having a bad day and it's take it down.

You know, know, that's one situation. But the other situation that I see happen a lot, and I'm not even just talking about professional caregivers in a facility, but people in the community, you have no control over somebody videotaping anything.

So I can easily envision a situation where there is a a person living with dementia who is showing out in a store or whatever, and other people in the community, with no regard of that person's privacy, posts that on the internet.

The ethical dilemma of sharing dementia-related videos on social media

[14:04] And I've seen a lot of TikTok things and stuff like that that's probably related to some of those type of situations.

And I'm really glad that you bring this up because I encourage family members to take videos of their loved one for memories, to make memories.

But I haven't added the caveat of, you know, don't slash it all over social media related to that person and their either abilities or inabilities or whatever it is.

So I'm really grateful that you've brought that up.

It makes me really pause and have to think through a little bit how do I educate family members to be mindful of the privacy of the person that they're still helping.

And I do believe a lot of people have good intent to show some of these videos.

But I think this is an ethical thing that we're probably going to see more of in the future. Yeah.

And I'm going to take an entirely left-turn kind of conversation, which is going to sound like it's coming out of nowhere, but it almost brings up the whole intimacy.

[15:26] Relationship between a husband and a wife and consent.

Like, when does consent.

[15:34] When is a person not able to consent anymore? Right. Absolutely.

So social media is definitely something that I'm going to have to think about a little bit more. So thank you for that. You're welcome.

That's a great way for me to learn and grow myself because we never stop learning, right? Right.

So why do you feel that the show has resonated so well with people?

The show's resonance during COVID and beyond

[16:00] I think a lot of it is, you know, we're dealing with COVID.

And so, you know, people are shut in, you know, they're staying home and they're maybe looking for they have the time now and they're looking for some help, their resources, discovering, you know, some answers to questions they may have had or, you know, what have you.

And I think that really was a catalyst for really kind of helping to, you know, get us on the path to, you know, resonating and reaching more people.

We've continued to see that growth even after, you know, COVID, quote unquote, was over, I guess would be the word.

[16:40] And, you know, I just think, you know, the sad part to that, though, too, Lizette, is, you know, shows like yours and ours.

And, you know, we're reaching these people and we're getting good feedback and, you know, what have you.

[16:53] It's at the expense of those people, though. Right. And what I mean by that is one of our dear friends who was on the show recently, he claims he didn't coin the term, but I credit him with it.

He says patients go to their doctors and the families go with them.

They get that diagnosis of dementia and it's kind of like a diagnose and adios.

Oh, I love that. Yeah. And once you get that diagnosis, you're kind of left to fend.

And we see that with our company. A lot of families don't know what they don't know. They don't know where to get the answers.

And we're not saying we, I don't believe anybody should say they have all the answers, but we're definitely not pretending to.

And we're just trying to hopefully put stuff out there that's going to be beneficial in their caregiving journey with their loved one.

So I think that's really helped to resonate and help the success of the show. Right.

Well, you bring up something really interesting. I love the diagnose and adios statement.

I may steal it from him as well. But I had an interview with a lady yesterday and her phrase was, you can't Google what you don't know.

And so people don't know what they don't know.

And so how do you go look for that information if you don't know what to look for? But the other part of it, too, is that I had a thought and where did it go?

[18:14] The other part of it, too, has to do with the fact that so many doctors don't even diagnose somebody with dementia.

You know, that's even worse to me than diagnose and adios, because at least if you have a diagnosis, even if the doctor's not doing something, me as a family caregiver could be looking for information.

[18:39] You know, it's like drinking water from a fire hydrant. You get all of this information out there, but at least you have a place to look.

What frustrates me even more is that so many doctors won't diagnose it, whether they're a primary care physician because it's not my job to diagnose dementia or because they They don't feel like they are qualified to do it.

Diagnosis and adios: the frustration with healthcare system's response to dementia

[19:05] Or if a lot of the mindset is, well, there's nothing we can do.

So why do we even diagnose it?

But the problem that that's creating for people is if somebody truly has dementia, you will see over time something's wrong.

[19:22] And then these families are struggling and they can't figure out because they don't even have a diagnosis to point them in the right direction. direction.

So diagnosis and adios is one thing, but, you know, not even being diagnosed or getting a diagnosis to me is even worse.

And the healthcare system is doing a terrible job.

Yeah. Well, and I, yeah. And I, and I've heard a good friend of ours has to show the D word and back in the day, cancer used to be the C word and it still is to an extent, but I think, you know, doctors are more comfortable discussing that because there's more options, more treatment.

And I feel like dementia might have kind of taken the place of the way they viewed cancer.

You know, doctor's first job is to cure and heal.

And when you present a doctor with something that for the most part, you can't cure and you can't heal, they almost feel like they have failed.

And I'm speaking for them. Maybe that's not fair, but I feel like they might feel like, Like, I don't want to diagnose this because I'm not going to be able to help this family.

So then in a way, they're not failing at what they're, you know, they've dedicated their lives to.

[20:33] And hopefully in the next five years, hopefully sooner, 5, 10, 15, 20 years, there will be more, you know, supportive treatments and, you know, therapies and, you know, methods for helping people living with dementia rather than just saying, you know, you've seen one person with dementia, you've only seen one person because it treats everybody so radically different.

There is no one size fits all.

And there's no real proven methods yet for treating it or preventing it.

There's suggestions and this could help, but there's no guarantees.

And I feel like the healthcare community, you know, I think that scares them in a way because, they're not going to be able, you know, they're not going to be able to do a whole lot to offer you any help yeah for sure and i know that for i know that it has to frustrate doctors i understand that but the the reality is that they're doing their their their their patients a significant disservice because you know even even watching your show like all home care matters if you don't know that somebody has.

Navigating the Challenges of Dementia Diagnosis and Management

[21:40] Parkinson's or Alzheimer's or a different type of dementia, how do you pick and choose sometimes the episodes that would benefit you to get the information that would help you so that you can make your journey easier?

I understand we want to cure dementia and I anticipate that that's going to occur, but it's going to take a long time.

It's going to take a lot more years. We're a lot further than we were.

But in the meantime, there's so many things people can do to help themselves, that aren't being done because they're not getting diagnosed. Right. Absolutely.

I, I, well, you know, I use the analogy of a flashlight.

[22:25] My flashlight needs new batteries, but I don't know what type of batteries to get. How do I know which ones to buy when I go to the store? You know?

Yeah, that's a great analogy. That's a very good analogy.

So what is something that has surprised you about this program or starting it?

Yeah, the success. Okay.

No, I mean, we literally, like I said, when we started this, it was just going to be an audio show, just a strictly true to the, you know, name, a podcast. So just audio.

And, you know, as we're preparing and getting ready to record that very first episode, I just kind of thought, you know, if we're going to sit here and talk about it and put all this time and energy into it, we should also record it and make it a video also.

So now you're getting a video and a podcast, but you're doing the work one time, a little more work involved with the video just because of the level of editing and things that we do.

But it just surprised me at how much it just really resonated with people and has taken off.

We never expected that. It was never the intention.

It was something we literally had like a one month plan for.

And then we were going to go back to our community events.

[23:38] So that's that's probably what has surprised me the most out of everything.

Wow. What a story. Was there in all of the programs and shows that you've done.

The Difficulty of Addressing Dementia in Children

[23:50] Has there been a topic that's harder for you to address for families or family caregivers?

For me, it's when it involves children. Okay. You know, I love my grandparents.

I spent my entire childhood because they live down south. We're in Michigan.

So I would spend every summer with them for, you know, four or five weeks.

And I loved every second of it.

You know, holidays when we were able to get down there, depending on, you know, other family obligations and things. things.

I love my parents dearly, but aside from probably my wife, because it's biblical, you know, the spouse comes before the children.

I probably don't love or care about anything more than I do my three kids.

So anytime it's a child involved topic, I have a very hard time with that because in my head, I'm always thinking, man, you know, how fortunate and blessed are we? We have have three healthy children.

And that really hit home on a topic we did about a year and a half, two years ago.

It's called A Mother's Story of Williams Syndrome.

And this mom, she actually lived in Australia, had been watching and following our show.

And at that point, we hadn't really done a whole lot about children.

And she had reached out and wanted to know if we would let her share her story.

Well, sure. You know, I mean, it's care related, it's caregiving, it's an unfortunate, you know, illness, if you want to call it an illness, a syndrome.

[25:18] But the catch to that was, Lisette, this was the first, her child was now in his 20s.

So, I mean, she's already raised him. He's off on his own, so to speak.

But she had never publicly shared the true story ever and she owes us to share it with that meant a great great deal to me personally and just I think it was a wonderful compliment to how she viewed our show and the integrity with which we run and operate it and.

[25:49] You know one thing that has always stood out for me about that interview one was just the, uh tremendous respect i had felt for her wanting to share that story for the very first time publicly but the way she went about it when her son was born and they noticed there was something wrong he ultimately gets diagnosed with williams syndrome he went through his entire childhood and early adult years with never being told he had that and nor did any any of his peers or neighbors or school, nobody, you know, I mean, you could probably tell and infer, but she told him after he became an adult.

So as a parent, I'm wondering, would I tell my child if I was in that situation?

[26:34] I don't know the answer to that still to this day. But then the other part of that is as a child with parents, would I want my parents to tell me, or would I want to go blissfully ignorant? Right.

I don't know the answer to that either. It's a very tough, tough decision.

And I feel like it's probably one that unless you're in that situation, you can't really make it till you're kind of given the decision to make. Right.

Well, it's interesting you bring up children, because earlier today I was recording one of my single episodes for the podcast, and I was talking about the mindset of a caregiver, how to keep your health and your own well-being in the whole process.

And we focus so much on spouses of people living with dementia or children taking care of a parent living with dementia.

But there is a huge subset of people who are actually family caregivers to a child living with dementia.

You know, so I'm very grateful you brought up that story about children, because there's so much focus on the older people with dementia, but there are, you know, children who have dementia and it affects.

[27:54] Is devastating to that family because, you know, the, the, the, the potential, right.

The Importance of Recognizing Family Caregivers

[28:02] You know, an adult who, an adult who develops dementia over time has had their life, you know, they, they've developed and they've had, I'm not saying it's not a tragedy, not by any stretch of the imagination, but a child hasn't even had that ability to get to live. Yeah, to their potential.

So thank you for sharing that. Well, and I'll just plug this.

We just had the directors on of a new documentary called Unspoken, and it's all about family caregiving, you know, and why it matters.

And it's families that are taking care of children with special needs, and they're trying to really, you know, shine a spotlight on this issue.

Because I think, if I remember correctly, the latest stats, it's like, and this is only people that acknowledge and recognize that they're a caregiver for a child.

It's over 16.8 million, I think, family parent caregivers to children with health and special needs.

Did you know that caring for a person with dementia doesn't have to be this hard?

[29:11] If you If you are struggling and you would like to join our next free workshop, the topic of the workshop is Three Tips How to Avoid Challenging Dementia Behaviors Without Stress, Anxiety, or Burnout.

I invite you to walk away with science backed dementia caregiving skills that many professionals don't even know after attending this free workshop.

If you'd like to register, message me the word workshop on Instagram or check out the link in the show notes below.

Right, for sure. Yeah, and you bring up another very important point, and this has been one of the biggest challenges as a person working to serve this group of people, of family caregivers, of people living with dementia, is a lot of times people do not even recognize that they are a caregiver, that they're a family caregiver.

The Denial and Identification of Family Caregivers

[30:24] If you're calling somebody to check on them, you're a caregiver.

If you're calling them to give them social input, you're a caregiver.

If you go over to mom or dad's house and mow the lawn, you're a caregiver.

But we don't think about it like that because we're not helping them go to the bathroom or we're not helping them take a shower or we're not doing their bills.

So yeah, identifying as a caregiver, a lot of people just don't see themselves in that role because it's not quote unquote impacted them to the point that they notice it.

And I think for some too, there's some denial attached to that as well, you know, for the family caregiver who's not acknowledging it as soon as they acknowledge that they're acknowledging you know mom or dad or you know whatever the scenario may be they're not okay.

[31:23] And that that that's a whole nother stage of the process too and hard to accept you know mom and dad need help and they're not the same mom and dad and you know there's yeah i i was a uh i never Never acknowledged it until after the fact, but my father came to live with my wife and I as newlyweds, and it was 24-7 care, but never once during that two and a half years did the word, the concept, the thought ever cross my brain, oh, wow, I'm a caregiver.

It just never occurred to me. I just thought, you know, I'm helping my dad. He needs help.

So yeah, absolutely. I think the numbers are probably much more staggering than what's reported. Well, I mean, a woman who's just had a baby, she's a caregiver, but we don't think of her as a caregiver.

We think of her as a mom with a baby. So it's very easy to not see yourself in that particular role.

The Dilemma of Driving with Dementia

[32:20] You bring up the whole, the other can of worms for me is the driving with dementia.

[32:28] Because people living with dementia.

Family, you know, if a family member acknowledges mom or dad is not safe to drive, then all of a sudden I have a problem because I got to take them places.

Right. So we kick that can down the road as far as we possibly can because it changes the life of the family caregiver.

[32:52] Yeah. How do I know? Yeah. Right. I had to do that battle of the car.

You know, it's not an easy thing to do, but driving is a privilege. It's not a right.

And there are other people on the road.

So if you're a family caregiver listening and I always talk about your scientific part of your body, you know, your gut is telling you somebody is not right to be driving anymore, then you can't ignore it because you're putting other people at risk.

And for us, our kind of our litmus test for that is we tell families, ask yourself, do you feel safe being the passenger or your children being a passenger in your loved one's vehicle?

If the answer is no, there's your answer. They shouldn't be driving.

However, I don't discount the extreme, extreme difficulty in making that call for the loved one because that's the ultimate attachment to their independence.

I mean, they probably were driving before they even lived on their own.

And now if that gets taken away, they're completely dependent or at least codependent on others, which I always tell families, let the doctor be the bad guy, you know, be the good cop, bad cop, even though you're the one probably feeding the doctor your concerns and saying, hey, you need to do something.

Thing, when mom or dad or whoever it is gets told by the doctor and they're complaining to you, just sympathize. Oh yeah, that doctor. Oh my gosh.

[34:14] But well, mom, that's the doctor. You can't go against them.

But I agree with you because you don't want to be, the doctor's going to go on.

They're not having that day-to-day interaction with your loved one.

[34:24] You're going to be interacting. You don't want them to direct their scorn towards you. I 100% agree with you.

Challenges in Making the Decision to Stop Driving

[34:32] My situation did not play out that way.

[34:36] Mostly because when this happened with my dad, I think it happened for two reasons.

Number one, my dad really fought it from the beginning. But the second reason was because of my background.

I didn't have the luxury of allowing it to be the doctor's decision.

I ended up having to...

The Challenge of Taking Away Driving Privileges

[35:01] Force the doctor's hand to send my dad for an independent assessment through a, you know, a driving rehab program in order to prove that he couldn't drive safely anymore.

Um, so yes, it's much better to get the doctor to be the bad guy.

Uh, but if the doctor won't be the bad guy, then you have to, you have to be able to, like I told my husband when we were going through the the whole process, I said, if I'm not willing to take it on, if I'm not willing to take on the battle of the car, how can I expect my family caregivers to take it on?

Yeah. You know, so well, Lance, if there was one more thing that you wanted people to know related to all home care matters or even non-medical homes care at home, since you guys do have your non-medical home health company, what would that be?

And how can people connect with you or where do you want people to go?

Oh yeah. Well, for the show, they can go to allhomecarematters.com.

You know, we have all of our episodes there.

Somebody listening or watching, if they're interested in sharing their story or if they think they have a good show idea, there's a form there, fill it out.

All forms are answered and responded to, and they're completely confidential.

Confidential, but the biggest thing I would want to just leave viewers and listeners with, not so much about us or, you know, what we're doing, but what they're doing.

[36:31] I don't want people to feel like they're alone. So many times, you know, family caregivers can fall into that kind of that trap of their social circle of friends and people, co-workers.

If they haven't been or aren't currently a family caregiver, it's hard for them to really give you the support and understanding they can say oh i'm so sorry how's it going, but to truly understand and appreciate what you're going through find a caregiver support group you're not alone there's millions of them out there it could be virtual, you know it could be at your local community center i know we run one at our church um, It's there. The support and the help is there for you.

You know, your loved one's going to be cared for. They're going to be safe.

But you got to take care of you first so that you can continue to take care of your loved ones. Right.

So up my alley that thank you very, very much because yes, you are correct.

Family caregivers do not take care of themselves and dementia in particular is a marathon. It is not a sprint.

So you have to take care of yourself early and often. You can't wait.

Absolutely. Wonderful. Well, thank you so much for being here today.

I appreciate it. Thank you for the invitation. Yeah, this was wonderful.

All right.

Pouring Heart and Soul into Serving Success Seekers

[37:55] Thanks for joining me today, Success Seeker. I pour my heart and soul into this program to serve you.

You can serve me by leaving a review on Apple Podcasts and join our free Facebook group, Dementia Caregiving for Families.

It's a positive and proactive space to navigate dementia caregiving together.

Get practical tools and find support, but without the verbal vomit.

Be a part of our community where we seek to find peace of mind and ease, despite the dementia diagnosis.

So join today and see you next time as our.

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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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