Caregiving Chaos: Finding Peace in the Storm of Dementia & End of Life Care w/ The Caregiver's Journey

Nancy and Sue from The Caregiver's Journey join Shaman Isis to discuss their mission of supporting dementia family caregivers with practical resources and emotional guidance.

• Founded their podcast after experiencing the challenges of caring for spouses with dementia
• Created practical resources because caregivers receive little guidance after a dementia diagnosis
• Share that caregiving can be isolating due to stigma and lack of self-identification as caregivers
• Explain that caregivers often experience "drip grief" as they gradually lose the person they knew
• Discuss common challenging behaviors like sundowning, delusions, wandering, and incontinence
• Warn about the "caregiver cliff" with dementia cases projected to double by 2060 while caregiver numbers decline
• Emphasize the importance of finding support through community groups and online resources
• Advocate for self-care as essential rather than optional for effective caregiving
• Encourage caregivers to "give yourself grace" and recognize perfection isn't possible
• Highlight a promising Medicare pilot program that may improve support for dementia caregivers

Connect with Nancy and Sue at thecaregiversjourney.com or find their podcast on any major platform.

Spiritual guru, two-time #1 best-selling author, and higher consciousness advocate Shaman Isis (aka Cynthia L. Elliott) is on a mission to turn the tide of the mental and spiritual health crisis with mindfulness practices, incredible events, powerful content, and motivational storytelling that inspire your heroes journey! Learn more about her books, courses, speaking engagements, book signings, and appearances at ShamanIsis.com.

Ready for a life transformation? Ready to bring your dreams to life? Then you will want Glowup With Shaman Isis: The Collection of inspiring books and courses filled with life lessons and practices that raise your vibration and consciousness. 

Ready for a life transformation? Ready to bring your dreams to life? Then you will want Glowup With Shaman Isis: The Collection of inspiring books and courses filled with life lessons and practices that raise your vibration and consciousness. 

Chapters

• 0:00 Welcome to The Caregiver's Journey
• 9:27 Understanding Dementia Caregiving Challenges
• 18:12 Emotional Impact on Caregivers
• 24:30 Managing Difficult Behaviors and Delusions
• 30:52 Rising Dementia Rates and Caregiver Shortages
• 34:42 Finding Support and Self-Care

Transcript

Speaker 1: 1:00

Well, hello, hello, hello. It is Shaman Isis. Welcome to Glow Up with Shaman Isis. I'm also known as Cynthia Elliott if this is your first time here, and I'm psyched I have not had two people on the podcast. I don't think I've ever had two people on the podcast at one time. I'm so delighted to have the ladies from the Caregiver's Journey, Nancy and Sue, here today. Please say hello to our audience and then tell them what you do.

Speaker 3: 1:23

Hi, it's very nice to meet everybody.

Speaker 2: 1:26

Yes, wonderful Thanks for having us. We really appreciate it.

Speaker 3: 1:29

Yes, we do.

Speaker 1: 1:30

Yeah, yeah, so I we, before we started recording, we were talking about the work that you guys do for your nonprofit. Uh, can you guys share for just a minute? Give them the them the couple sentences on really what you do.

Speaker 2: 1:43

Sure, we're focused on delivering resources that help dementia family caregivers manage day-to-day dementia caregiving challenges, because we went through that and we both cared for multiple people with dementia over the course of our lives and most recently our husbands and found a lack of really practical tips on how to handle common things that were happening. And Sue went through it first and so thank goodness I have a friend who had been through this. So I called Sue many times in my husband's dementia journey and asked for help and advice. But not everybody's got a Sue. So we set out to create a way for dementia family caregivers to get the practical advice they need to handle what they're committed to at home or in a community, actually, either one.

Speaker 1: 2:39

I love that you're doing this. I think this is a conversation that really has to take place on a higher level in this country and that not only are we not talking about how we're caring for our elderly or people who are sick, it's sort of like it's almost like a dirty little secret in this country. And then when you get and this is my opinion, obviously I'd love to hear you guys point of view I don't. I really don't feel like we're having that conversation about the fact that the system in America is not really structured. Well, we could have a whole conversation about the healthcare system. What a hot mess it is, but it's not really set up to support people in America who are going through something like the caregiver's journey, taking care of people who have dementia. Do you guys agree with that?

Speaker 3: 3:18

I'd say yes, and in many ways, one of the things that we're learning about is that more and more the voices are raising about it, so that there's more of a groundswell right now, and there has traditionally not been much of a groundswell, because so many people who are caregivers are also working in businesses and many businesses don't identify and recognize family caregivers, and because of that, the employees don't self-identify and so they don't share with other people that they are caregivers. And then another part of it had historically been the stigma of it that there's the family member and we didn't want to share what's going on with the family member, and then, kind of, the third leg of the stool is we live in a country that has diverse cultural communities and for some of them they aren't caregivers. This is just what you do. This is family, and so it's a blend of a variety of different things.

Speaker 3: 4:16

As the baby boomers are aging out of being able to be caregivers and they're now becoming the care receivers, the impact and the stress is raising the need for us to communicate openly about the fact that people are caregivers and find better ways systematically throughout the country and in businesses and in homes, to support family caregivers, and that's part of the reason that we're so vocal with providing the support we are is to help be one of those really responsible voices for caregivers Once they're seeking support. We want them to know that we're a trusted resource they can come to to get answers to questions they may not even know to ask. I definitely don't know to ask, yeah.

Speaker 1: 5:05

Yeah, you bring up a lot of really good points there. One of my biggest disappointments in the way that America has kind of unfolded is that our healthcare and insurance systems are so corrupted and the price of care of any kind has become so absurd and outlandish for the vast majority of Americans, especially given the economy and what's going on with employment now. Combining that with the shame of having to actually personally take care of somebody because your system or your structure within your family doesn't allow for there to be support. And then most businesses treat that in a very sort of subconscious way, the same way that they do women needing to take care of their children, like keep that at home, don't bring that to the office, that's your private information. Or if you do bring it up, then you can't possibly be doing a really good job at your job because you have this other job at home.

Speaker 1: 5:59

I mean I think it's a really interesting dynamic that speaks to a lot of the systematic issues that we have here, but also just the cultural issues. I mean we have some cultures, like you mentioned, talk about multicultural America becoming multicultural and there being multi-families in one household being parts of cultures that have become more dominant here in the States, but still the vast majority of people in this country don't actually live in the same household with their parents, their grandparents, and so there's a there's a lot there to unpack. So when you to backtrack for just a second, when you two, firstly, this was inspired. The caregiver's journey, the podcast and the work that you're doing was inspired because, sue, you went through it first and then Nancy was going through it and contacted you for help. Do I have?

Speaker 1: 6:43

a spam and it just sort of unfolded from there.

Speaker 3: 6:47

It did. Yeah, my first caregiving journey began when I was in my mid twenties and I've had a number of them over the last 40 years. And you, you know, I didn't self-identify, never self-identified in in work. It wasn't appropriate at the time, it would have altered the trajectory of my career and then, as Nancy was going through hers, it was really so fortunate. It's interesting you wouldn't have planned that this brought us together. You know, they say in the moment of an experience you can't possibly know if it's ultimately good or ultimately bad.

Speaker 2: 7:33

And something that was challenging for both of us has led us to create something that we hope is creating something, having been friends and neighbors, but to reconnect and be able to just be on the same wavelength. So much of what we do all day, every day, we're on the same wavelength. We have a conversation, we know how to challenge each other respectfully, but I think that creates a really great end product and that's the response we've been getting from the market at large and from our listeners is that we hit the nail on the head and they're getting the kind of information that they need and, in the end, our only objective is to help support dementia family caregivers A simple objective.

Speaker 1: 8:16

What are some of the main issues that you consistently see that people struggle with when they're on that journey?

Speaker 2: 8:22

So let me start with something.

Speaker 2: 8:24

Sue and I often say that what happens when a loved one gets a diagnosis is you go to the neurologist, you know something might be wrong, you're suspicious, they meet with the neurologist and what happens when they get?

Speaker 2: 8:38

You come out of the neurologist's office, the neurologist says they've got dementia and you go home with a bunch of medication or conversation around the person living with dementia and how we're going to progress through their journey with the doctor, but there's nothing that the family caregiver goes home with on how to be a caregiver. Not only that, a lot of people don't even identify as a caregiver. They don't think about that as their role. So there's just the beginning of the process, which is how do we help people know they're a caregiver? And then, once they do, how do we help them get started understanding what's coming and how do they put, how do they leverage what's coming to figure out how to manage things at home with more confidence, more patience and more peace of mind, and that will help them create a better experience for the person living with dementia as well. You'll be a better caregiver, and if you're a better caregiver, the person living with dementia is going to get better care, mm-hmm, and that's kind of how it all ties together.

Speaker 1: 9:45

Yeah, from my own experience, you know I've I've cared for several people over my lifetime as well, and when my sister was dying of um uh, cancer, she got from being a prostitute, uh, we grew up in care in an orphanage and when she got sick, it was, it was, it was. There was a lot going on. You know, I had to go get her from the crack house and then get her off the drugs and get her into care and and the emotional and mental trauma that I was going through as an individual was something I could not get any help for from my.

Speaker 1: 10:16

I couldn't even talk to her. They didn't even. They weren't there. I mean, and that was obvious, they were there to take care of my sister, but I it was like there were no resources, there was no conversation, stress the guilt that I felt about being like, oh my God, would you stop screaming. You know, like you know, when she was in pain and and I so, I know that experience that we don't talk about, which is the, the, the emotional experiences that you have when you're caregiving, that nobody wants to mention because of the shame attached to not always being able to handle it perfectly. So true.

Speaker 3: 10:45

And part of it is the shame and which is unfortunate because that's really not the correct motion.

Speaker 3: 10:50

But they don't know what emotion to have, and one of the things that we try to raise the level of awareness of is it's reasonable you wouldn't know how to feel, and it's reasonable you wouldn't know what to do. And it's reasonable you wouldn't know what to do because you didn't go to school for this and you didn't come out of the meeting with the doctor with a guidebook of things to do. And so we associate emotions based on things that we have what I call a reference reservoir what we've observed, other people have done, and so you say, well, this is what they did, so this is what I should do. They don't know how to feel for themselves, and often they attach an incorrect emotion for what they're feeling. So where they say that they feel guilty, well, I don't know who's looked up guilt. They're angry, but they don't know how to process it. So part of what we're doing is helping people understand. It's okay not to know, and we're going to help you figure these pieces out. And then another huge part of it is part of the reason they don't know is well, they've never done it and they don't even know who to ask.

Speaker 3: 11:58

And what we do is we connect people with resources that will help them get answers to questions they don't even know who to ask. And what we do is we connect people with resources that will help them get answers to questions they don't know to ask. We recently had an episode with two very experienced elder law attorneys and the things that they were introducing people to that you wouldn't know if this hadn't been a part of it and the things, for example, there are. The elder law attorneys that my husband and I worked with changed the trajectory of our ability to provide care and to understand the process and to make the wisest choices while we still could, to be able to put us in a position to provide care, and so a lot of it is just people don't know, and that's really sad, but that's the reality of it. It's easier to find information now online, but you're like, well, what do I search for Exactly?

Speaker 2: 12:54

And the other thing is, if we find at least the response we get back from listeners. Listeners is, if we give people the essential knowledge that they need, they're more confident. And if they're more confident, then they just they get a piece about them which keeps this guilt and and you know continuous beating yourself up, which is what happens when you're trying to, you're struggling with I don't even know what to do, cause if you'd know what to do to help your sister, you would have done it, but instead you don't know what to do, so you beat yourself up and you're frustrated and upset and angry. And that's very similar to what happens with dementia family caregivers. They don't know what to do, they get frustrated.

Speaker 2: 13:32

Very, think of the same person. If that person asks you the same question over and over and over again, it'd be pretty easy to get frustrated. But you know they, you don't understand why they're doing it and you don't understand what you're supposed to do to help. And so the more information we can give people, the easier it is for people to to live in that uncomfortable, difficult situation.

Speaker 1: 13:54

You know your shares on both of your shares on that actually bring to mind something that I think is kind of an interesting angle, and that is we're not taught emotional mastery and we're not taught mental fitness. In our world we are taught to be victims, we're taught to try to align with perfectionism because we live in a world that sort of is laid out in a way that you're sort of expected to, to know or understand things and without teaching people emotional mastery. There there is the guilt and the shame because you don't understand. You don't understand, you feel guilt and shame about not knowing what to do or not doing it perfectly, and it's a very subtle thing. So I teach people how to raise their human consciousness and at the bottom of human consciousness the lowest vibration is guilt and shame. And then it gets to.

Speaker 1: 14:41

You know things like, you know anger and you know it's all fear based and it is and and teaching that would be such an interesting thing is like saying you know, here's some emotional mastery, because beginning to understand why you feel that way, like at times when I would get angry- and my sister she's dying and I know she's dying.

Speaker 3: 14:59

And you're angry.

Speaker 1: 15:00

And I'm getting angry, and I'm getting angry at myself for getting angry.

Speaker 3: 15:03

Yes, yeah, because you don't know and you don't know what to do. So it's easy to put the label of what an emotion is on it, when really, if you were able to break it down or have a conversation with someone, you were fearful for your sister, you were frustrated because you didn't have answers, you didn't have a clear path, so it gets to be overwhelming and it just keeps snowballing, and so, actually, you're not angry at your sister, you just don't know what to do. And we're providing the answers to questions people don't know to ask or where we're talking about topics, we talk very, very specifically and give these answers. And this is the reason why what you're bringing up is exactly why we have the format that we have and we call it these practical tips and candid conversations, because we want people to be able to be empowered with answers to things so that they can take action. And then the other part of it is that when you're in that journey and you've never done it before if, if you hear something, if you listen to the podcast episode and you go, aha, I know someone.

Speaker 3: 16:25

We have had people who have sent us messages in response to one of our podcast episodes that are like I shared this because they were going through it, and so it's raising the level of the consciousness of the planet, and that's something that you do. There are a variety of different ways we can do that, and in our own little corner of the world, this is what we're doing, because so many people are impacted by it, and both of us, when you take our collective years of experience and variety of kinds of experience we've gathered, it's not wisdom until we share it. So we've got all of this and we're sharing it to be able to touch other people's lives. Because, you know, nancy and I both talked about this, noah, so I'm not speaking for her. For her, we didn't know what it was. You know we were struggling with it too.

Speaker 1: 17:18

Wow, I love the way you just said that. That was really beautifully said, Thank you. So dementia is, I find it really interesting In Europe. It's my understanding that they are. They believe that it is the third level of diabetes or that it's related to diabetes, which I find it very interesting.

Speaker 2: 17:39

I think they're over that. I think I read something about that that just recently, but I think they're getting over that, so yeah, I'd be interested to see what's going on with that.

Speaker 1: 17:47

But dementia has its own kind of really interesting. So my ex-husband, his grandmother I remember her going through that and it leading to her eventual end and and watching like getting calls in the middle of the night and having to go find her in the street because she was running exactly in her nightgown. So what are some of those issues that you deal with, specific to dementia, that are challenging in the caregiver journey, that you wouldn't necessarily see?

Speaker 2: 18:10

So behaviors is a perfectly good example. I want to go home is such a typical one that people try to deal with, which is, you know, all of a sudden it's late in the afternoon. That's when people with dementia typically. Sundown is a common term. Tired brain syndrome is what Sue calls it. But they're tired and so they're struggling so much to figure out how to live all throughout the day and just keep up with. They're confused, it's cloudy in there and they're just doing the best they can, and they're exhausted and so they lose their ability to be in touch with reality, and so it's not uncommon for them to have delusions in the afternoon particularly. I want to go home's a good one. Someone stole my wallet.

Speaker 2: 18:51

There's so many that are so typical. It's unfortunate. But when you understand that that's how that's happening, why that's happening and then how to actually get through it. So we have a podcast on how to handle delusions, so that you understand how to get through it. We did five podcasts on incontinence, from how to know it's starting and how to get prepared for it to how to change someone who's bed bound, because most people have no earthly idea how to handle someone who's an adult who's got incontinence, and so there's a lot of information they needed to know. Wandering, as you described, with your grandmother another common behavior that needs to be managed, and here's things you can do to prevent it. And here's how you search for someone. If someone with dementia wanders out of your house, here's the process you should go through to start the search. So just so many examples. I can't even start with bathing and dressing and brushing teeth, because people with dementia lose their ability to do all of that, and so, as a family caregiver, you have to step in and help.

Speaker 3: 19:59

And one of the things that can be so hard on that is, for example, with my dad, my hero. My whole life, my dad had these two lessons I'm going to teach you how to be safe, so you'll know what to do when I'm not here, and I want to teach you how to think so you'll know what to do. And my whole lens of my life is through my dad being my teacher, being my guide, and I had a wonderful mother. It's not the absence of the mother, but but those were the things. It's so hard when they don't have access to that anymore.

Speaker 3: 20:32

It's hard for you not to think of them through that lens and want that to be for them. So you want to start there and they don't have it. They're frustrated and you're frustrated, and it's it's learning how to let go of the expectation that they have access to things that for their whole entire lives they had access to. So you're also it's what I call drip grief. You're also grieving a little bit every single day when one of those goes away or when something else comes. So you have more than just the emotion of exactly what's going on. You've got all of the surrounding emotions, and so it's a complex experience for both the caregiver and the care receiver.

Speaker 1: 21:10

You bring up an interesting point. I remember being in my former grandmother-in-law is that even a thing? I don't know, I'm not even sure what to call that and she had dementia and, as I mentioned earlier, and I was standing by the china cabinet I happened to collect teacups, antique teacups, and I was looking in it and she's like get away from that cabinet. Southerners are all thieves and it was like, and I was like who is?

Speaker 2: 21:36

this person I was like oh, my god and my my ex was.

Speaker 1: 21:39

I mean, he thought it was hilarious and I was like no, she's demonic. They can change personalities. Yes, yeah, and that must be very difficult to deal with.

Speaker 2: 21:54

And you know what else. I think we were talking about our own emotions and how they affect our behavior as caregivers. But if you reverse that and think about the person with dementia's emotions, and when they act out in different ways, they're having the same fear. They can no longer do what they wanted to do. They don't understand what's going on. They're confused. That creates fear in them, and I think you even said it.

Speaker 2: 22:15

I'm a true believer that at the core of all bad behavior there's so much of it's just fear. So they have major fear. They don't know where they are, they don't know who's there, they don't know what to do, they don't know how to get home. They have so much fear. Then they begin acting out. And then they're acting out in a way that no one can explain or don't know how to deal with, and that's not typical of their personality. People are lost with how to handle those situations because they're not used to that coming out of that person. So there is so much behavior once you understand what they're going through that you can handle so much better because you've put yourself in their shoes. You have to understand what their shoes look like, but once you put yourself in them. Then you can manage those behaviors a lot better. And I'm not saying it's easy, that that would be the wrong thing to imply, but you can get through it. It's probably the right thing to say.

Speaker 1: 23:09

Yeah, yeah, I'm laughing because I can see my dog in the back.

Speaker 2: 23:13

I can too, and I'm really laughing because that looks exactly like the dog that's at my house right now.

Speaker 1: 23:18

Pickles, it's pickles. It's actually not even mine, it's my, it's my business partner's dog, but I've known her all life so I consider her kind of a kind of mine. But uh, sit down, sorry I'll clip that out of the podcast. Uh, so the? Um, I was curious about the. So, given that the average so the average person with dementia, is it dementia that eventually kills them, like that's the part I'm a little confused about.

Speaker 3: 23:44

Theoretically no. Dementia. The diagnoses and there are a variety, dementia is an umbrella of many different types of diagnoses that are neurocognitive disorders. So we've talked about Alzheimer's disease, frontal temporal Alzheimer's, dementia with Lewy-Boddard's, so there are a variety of different diagnoses. They all impact the brain's ability to do its functions correctly. So what typically happens is some other function in the body can no longer function correctly. So does it contribute to it? Yes, is it the direct cause? For example, heart disease is a direct cause of someone dying of heart disease. They they're just. There's a direct correlation in there and most dementias are a side kind of a, if you want to call it that. They contribute to it, but they're not the direct cause.

Speaker 1: 24:41

if you want to call it that. They contribute to it, but they're not the direct cause. Okay, yeah, I was. I was curious about that Cause. I I haven't been around it enough to actually understand you forget how to swallow, so you get pneumonia.

Speaker 2: 24:51

You know those typical things that that you'd see in other neurocognitive disorders, where someone forgets how to forgets how to chew and swallow, and so things go down the wrong pipe and they get what's it called Aspirating. Yeah, they aspirate and then they get pneumonia and then they die of pneumonia. So it's the most contributing factor, but it's definitely causes them to die of something.

Speaker 1: 25:15

Is it my imagination that I don't recall a lot of people having dementia when I was young and I was very aware? I mean, you grew up in the, in the system, you trauma aware, like you're always studying everybody's behaviors, engaging, so I was very aware of people, especially older people. I don't remember being around a lot of people with dementia. Is it my imagination that it seems to have increased?

Speaker 3: 25:35

there are. There are several things. One, yes, it has increased exponentially. The second thing is generationally, it was not discussed, there was not a lot of information about it, there was not a lot of awareness of it, there was not a lot of understanding about it, there wasn't a lot done about it. People would say, oh, he's senile?

Speaker 2: 25:54

Yeah, well, that means he had dementia, right? But remember hearing somebody senile.

Speaker 3: 25:59

Oh, they're a little off, and people did not talk about their loved ones. You didn't see them anymore. They didn't talk about their loved ones. They didn't. You know, it wasn't something like now when people have a diagnosis dementia they're going to the grocery store with you and you're talking about and there's much more of an awareness of it. So the prevalence of it has increased and the awareness of it has increased, and yet yet it was. It was around. It also was not very well understood.

Speaker 2: 26:27

Yeah, but it is increasing. Just so you know the stats in the U S there's about 7.4 million people living with some type of dementia in the Americas or in the U? S and that's and it's 2025. That's expected by 2060 to be 14 million people, unless we can fix this disease.

Speaker 1: 26:45

Yeah, yeah, I know, you just gave me chill bumps, I know Not pretty.

Speaker 3: 26:49

It gives everybody chill bumps because, on the other side of it, the pool of available family caregivers has gone, not too many years ago, from seven to one, down to a little less than four to one now, and it's by 2050, I think it is it's going to be down to about 3 to 1.

Speaker 3: 27:06

And many of those are because the baby boomers are now becoming the care receivers, and one of the other challenges is because many people have stopped coming into the United States to provide the kinds of jobs that included being family caregivers. We're having an increasing crisis in finding family caregivers, so at the same time that we are, we have more people aging to become the pool of people diagnosed with yeah I'm sorry, thank you for correcting it Paid caregivers, yes, so at the same time that we're significantly diminishing the number of available family caregivers, we are exponentially increasing the need for paid caregivers, at the same time, where some who live here domestically are like I'm done, this is hard work and I'm finding something else because it doesn't pay well or I am not coming into the United States to have that job, and so we have a country where we have not figured out that solution yet and over the course of the next 20 years. It's going to be something that's way, way, way in the forefront of issues being addressed.

Speaker 1: 28:17

Yeah, absolutely. You know the way that American and I understand just from having written A New American dream, which is the book I wrote about studying the American dream, its origins in the post-World War II and they would take care of each other. It was this idea that living on your own was really so important, but it actually disenfranchised us from family and from care. And then we built this health care system that designed these awful homes. I mean, I I volunteered in a lot of them growing up and it was I was appalled 20, 30 years ago, and they seem to have just gotten worse.

Speaker 1: 29:01

We do not handle aging in this country. We do not take care of our elderly in the way that you see in other countries. Just the honor in which it's treated to age is an honor, and to take care of somebody who's aging is an honor in some other country Not every country, but in other countries. And here we're just a hot mess and we've got this massive number of people who are, who are going to need care and we don't have, as you so well mentioned, we don't have the caregivers, we don't have the system, and what systems we do have are really built to to rape what wealth anybody does have from them, like the pricing and the cost of just getting an aspirin when you're in. I'm losing my adult care. I forget what what the centers are called when it's elderly care and they spend like-.

Speaker 2: 29:44

Senior centers.

Speaker 1: 29:45

Yeah, the senior centers are a horror show. I mean, they're not much better than prisons.

Speaker 2: 29:50

We are getting there is hope on the horizon just from a Medicare perspective, because traditionally in order to have any support from the US government you had to be on Medicaid and that was you could get some support.

Speaker 2: 30:08

Every state's different how much support you can get, because Medicaid is different every state. But there is right now a pilot program with Medicare that is focused, at least in our world, on dementia world, on dementia family, on people living with dementia, on providing some level of education and support for the family caregiver of the person living with dementia, in addition to providing medical support for the person living with dementia. So it's being piloted right now. It's a six-year pilot where a small number of organizations are involved in it. Now In July another 300 organizations come on board to continue the pilot and grow it. And fingers crossed that we prove that it's worth our while to support not just the person living with dementia, but that Medicare insurance is worth them spending time and money on educating the family caregivers on how to support the person living with dementia. So that is a bit of a bright spot. It's it's a pilot and it's obviously has a lot of work to do, but there's hope, at least we're trying.

Speaker 1: 31:16

Yeah, I, I try to, I try to be hopeful, the we. We really need a massive overhaul of of just the way we go about a lot of things in this country, and I love I mean I love america, I'm very patriotic but we have some serious systematic issues that need addressing. The way a country treats its homeless, it's sick, its children, um, and its elderly is very telling, and in america we don't actually take care of our people. The greatest country in the world does not take care of its people, and I can't help but wonder if that's not about hierarchy and reinforcing a system that if you just keep working harder, you'll be okay.

Speaker 1: 31:53

I love the work you guys are doing. It's incredible. Not everybody has someone that can actually help them, and I say this as somebody who grew up in the system, so obviously my perception of it is going to be a little bit skewed, but it's like you know who's going to take care of me and in the system that we have right now, and I don't see how that's even possible without being in an awful situation or less ideal than it should be. What would your advice be to like? Just what are some of your favorite bits of advice for people who suddenly find themselves on the caregiver's journey.

Speaker 2: 32:27

First, understand that when you get, when your loved one gets, a diagnosis of dementia, you just got a diagnosis of caregiver and you're not just a caregiver for that person, you are a caregiver. If you're the primary caregiver, you're a caregiver for you as well no-transcript. What would you say?

Speaker 3: 33:05

I completely agree is that on the journey it's important for us to prioritize the fact that we never have to be alone. There's help all around us. It's reasonable we wouldn't know the answers to questions. Diagnosis one of the great places to start is looking for support groups in your community that support the diagnosis and start asking questions, because one of the things I mean, nancy and I, are passionate about sharing the messages. There are people in communities that may not choose to do that through the medium that we're doing it, and yet they will go to support meetings all week long and share their lessons. And so, whatever the diagnosis is, help is all around, and so often we hear from people that they just feel so alone and so isolated. You don't have to reach out. And if you can't find anybody, reach out to us and we'll help you find somebody.

Speaker 2: 34:01

And you know what. We're circling back around to where we started, cynthia, and that is don't feel shame and guilt when you don't know what to do. Right, that's where we started and it is so reasonable. You don't know what to do and don't shy away from asking for support and asking for help and finding support and finding help. You don't just have to ask. Go find it, you know. Go find a support group. There's good online support groups as well. Obviously, we encourage you to come out and look at the caregiver's journey website. You can go see a blog or a podcast about almost any topic you can come up with. There's this little search bar in there. You can search based on your, your question, and you can probably find a podcast or a blog on the topic to help you question, and you can probably find a podcast or a blog on the topic to help you. But, but whatever it is, look for support and reach out and don't feel guilty because you don't know.

Speaker 1: 34:54

Right, yeah, that's wonderful advice. I would add to that too, as somebody went through it. It is okay. All of your emotions are okay when you're going through a situation like that. You will have times when, when emotions will surface that the you know the perfect, the perfect version of you wants to give you crap for, and you know what it's a it's a unique situation with somebody who's not behaving like their normal selves.

Speaker 3: 35:19

Right.

Speaker 1: 35:20

And it creates some strange dynamics where you're going to have moments where you're like, oh, I can't believe. I just thought that it's okay, you know.

Speaker 3: 35:26

Yeah, you're like, oh, I can't believe. I just thought that it's okay. Yeah, and I think one other thing that I would prioritize is that it is so easy for us to flip the script incorrectly, which is one of the most important things we can do to care for our loved one is to care for ourselves. That prioritizing our own self-care and both Nancy and I have done this, where we've checked that off of our list in order to provide more care for our loved one, and both Nancy and I have done this, where we've checked that off of our list in order to provide more care for our loved one, and then we're not. We don't have the capacity to provide that level of care.

Speaker 3: 35:55

So self-care looks different for everyone. If you struggle with with caring for yourself, if you feel like, like I used to shave up, well, I don't need to, I can get an hour less sleep, I can do this, this, this. So when you keep shaving that off can get an hour less sleep, I can do this. This is when you keep shaving that off. There will come a time when you have shaved off more than you can and if you feel like you, you have. Or if you don't feel like you can practice self-care if you don't have a connected emotion to give yourself permission to practice self-care. Get an accountability partner. Get someone else who can help hold you accountable for practicing self-care, because self-care is you doing it and nobody else can do it for you. They can help make sure you do it. But if you, the consequences of you not practicing self-care are bad for you and your care receiver.

Speaker 2: 36:40

Right, and Sue always says give yourself grace. Give yourself grace, and every time when we're talking about a topic in our podcast we'll get to the end of the topic and my goodness, I can't believe. I just thought that. But give yourself grace, because this is a long, hard road and, honestly, you're not expected to know how to do it perfectly. No, one expects you to do it perfectly. Give yourself grace.

Speaker 3: 37:20

Is there anything perfect about it?

Speaker 2: 37:21

No, it's what you'd call a perfectly imperfect journey. It is the most. It will be imperfect, no matter what Right.

Speaker 1: 37:33

Ladies and gentlemen, make sure that your cup is overflowing.

Speaker 1: 37:34

You know you can't keep pouring into other people when you're taking care of them If your cup's not overflowing, and give yourself grace is such an important one. That's one I really I've really struggled with. I had a terrible self-love program for a long time, uh and uh. I think it's the most powerful thing that any human being can do to show up the most beautifully that they can and build the most wonderful life experience for themselves, regardless of your circumstances and repeat that last part regardless of your circumstance. Learning learning how to be happy is not about having a perfect life. It's learning how to deal with all the crap that's actually going on in your life with the best attitude possible.

Speaker 2: 38:08

That's a great message to dementia family caregivers too, because it you know, it is a difficult journey and and you've got to find a way to find joy in life, because you can't just say, oh, I'm going to put these 10 years aside and be miserable. That's not the not the way to live.

Speaker 1: 38:23

I love that. Oh, thank you so much If our listeners excuse me, if our listeners wanted to learn more about you guys and the work that you do and find your podcast where would they go?

Speaker 2: 38:33

So they can go on any podcast platform and look for the Caregiver's Journey, or go out on the web and look for thecaregiversjourneycom and they can find us. That way They'll see us right on the front page. They'll recognize us.

Speaker 1: 38:51

I love that. Thank you so much, you guys, for coming on the show. I really appreciate it. It was such a wonderful, stimulating conversation. I appreciate the work that you're doing. Thank you so much.

Speaker 3: 39:00

Thank you for inviting us and thank you for your excellent questions and preparation, and thank you for bringing a message that will impact so many people who follow you, because it's touching so many of their lives.

Speaker 1: 39:13

Thank you, thank you you guys heard it here on Glow Up With Shaman Ice is. You know, take care of yourself so you can take care of the loved ones in your life. If this is your first time here, you must subscribe. It's intelligent listening which we need more of in this world today, so please subscribe. If you're not familiar with my work, I'm spiritual teacher and three-time bestselling author of Shaman Isis, also known as Cynthia Elliott. To my friends and family, go visit shamanisiscom. You can check out the events, speaking tours and all that kind of jazz I have going on and, of course, you can order my stuff, because, you know, got to support the work we're doing here to teach other people how to raise their human consciousness and learn how to show up in life in the in the driver's seat. I love you guys. I'm wishing you a beautiful week. Thanks again, ladies, and I look forward to seeing you in the future. I just know we're going to be running into you too again. Well, definitely.

Speaker 3: 40:01

We're looking forward to it, thank you.