FIND OUT EXACTLY HOW YOU ARE DOING AS A DEMENTIA CAREGIVER

TAKE ASSESSMENT

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Caring for a loved one with dementia is a profound journey, one that often requires more than just practical caregiving skills.

It demands emotional resilience, understanding, and a deep dive into the lesser-known aspects of the condition. But what are these lesser-known aspects, and how can you, as a caregiver, better navigate this challenging path?

In this episode, we discuss Anna Edmonds' caregiver journey with her magazine "Reverse" and podcast "Navigating in Reverse."

Anna shares her transition into caregiving after her mother's dementia diagnosis, while Lizette, a dementia coach, provides insights on Christian caregiving and finding strength through faith. They stress educating caregivers, early dementia diagnosis, and faith's role in caregiving.

Navigating in Reverse During Dementia Care

5:32 Challenges of Long-Distance Caregiving
10:56 Creating the Caregiver Resource Platform
16:13 Overcoming Mistakes in Caregiving
21:09 Frustrations with the Healthcare System
23:40 Providing Resources for Caregivers
26:12 Ask the Dementia Coach Segment Launch
28:07 Identifying Caregivers
30:30 Planning for the Future
31:30 Unveiling Caregiver Trauma
35:06 Facing Personal Trauma
38:54 Changing the Narrative
45:58 Prevention and Awareness
48:31 Manifestation of Trauma
50:44 Supporting Caregivers
52:16 Addressing Burnout

Emotional and Psychological Dimensions of Dementia Care

Many caregivers are well-versed in the medical and practical tasks of dementia care, such as managing medications, doctor’s appointments, and daily routines. However, the emotional and psychological dimensions often go unaddressed.

The impact of witnessing a loved one’s cognitive decline can stir deep emotional responses that are rarely discussed openly. It's not just about managing symptoms but also managing the caregiver's emotional health.

The Hidden Struggles of Caregiving

While resources for physical and medical aspects of dementia care are widely available, the personal stories and emotional struggles of caregivers are less frequently shared. Caregivers may experience feelings of guilt, loneliness, and emotional exhaustion, which are seldom acknowledged by traditional caregiving narratives.

Addressing these feelings openly and seeking emotional support can be pivotal in managing the caregiver's well-being.

Importance of Tailored Resources and Support

Standard resources often do not cater to the unique needs and situations of each caregiver. For instance, many caregivers find themselves adapting their lives around their caregiving responsibilities, which can lead to a significant emotional and physical toll.

Recognizing the need for tailored support, several platforms and communities have arisen to offer personalized advice, emotional support, and practical tips specifically geared towards the nuances of dementia caregiving.

Learning Through Community and Shared Experiences

One of the most underutilized resources in dementia care is the power of community and shared experiences. Engaging with others in similar situations through support groups or online forums can provide comfort and practical advice that are not found in textbooks.

These communities often discuss topics such as navigating family dynamics, dealing with the changing roles within the family, and finding moments of joy amidst the challenges.

The Role of Faith and Personal Coping Strategies

For many, faith plays a crucial role in coping with the challenges of dementia caregiving. It can offer a sense of hope and resilience amidst difficult circumstances. Personal coping strategies, whether spiritual, psychological, or physical (like regular exercise), are vital in maintaining the caregiver’s health and emotional stability.

Website: https://reversemagazine.us/

Read More:

Walking By Faith: One Christian Caregivers Dementia Care Journey

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Finding Dementia Caregiver Resources

[0:00] As a family caregiver of someone with dementia, do you struggle to find resources? I want to invite you today to listen to Anna Gelbman-Edmonds' episode where we start to unpack why she started her magazine called Reverse and her podcast called Navigating in Reverse after her own caregiver journey. And then I'd love to invite you, if you are struggling as a family caregiver of a person living with dementia, to check out our new resource that we have on this podcast, where I'm going to be doing open, free coaching calls for family caregivers of people living with dementia. The information will be in the show notes how you can sign up for a session where we do some free coaching related to your specific dementia caregiving needs. So check it out.

Coping with Dementia Diagnosis

[1:10] Music.

[1:15] Have you recently found out someone you love has dementia? Struggling to wrap your head around how to be a Christian caregiver? Searching for answers by joining countless Facebook groups but find them toxic? Learning how to cope with dementia feels difficult, but learning a Christian caregiving worldview can be easy. Hey, brother and sister in Christ, I'm Lizette, occupational therapist, pastor's wife, turned dementia coach, and a daughter of dementia. In this podcast, you will learn the truth that the way to make dementia care easy is your faith. Knowing that a loving God has decreed this hard providence in your life makes all the difference. Here you will gain skills. You will be challenged by what God says in his word about caregiving, and you will to learn exactly what dementia is and is not. Find clarity and certainty from God's word so you have perseverance for this journey. Use science-backed solutions and biblical principles to redeem your time. Praying this blesses you as we dive into dementia from a Christian perspective. Let's glorify God despite dementia.

Interview with Anna Geldman Edmonds

[2:42] Well, welcome back to today's episode of Dementia Caregiving for Families. And I am very excited to have a friend of mine from Columbia, South Carolina, who I have had the privilege of being on her podcast earlier, well, end of last year. And now she is coming on to this podcast to talk to us a little bit about a couple of very different things. Her name is Anna Geldman Edmonds, which is a mouthful. And I'm going to have her introduce herself and tell you guys a little bit about herself. And then we're going to get into, I think, some really interesting conversations today. We've been chatting off of the camera before we got started. So, Anna, Anna, thank you very much for being here today. Thank you so much for being willing to come on to my fledgling little podcast. Well, golly gosh, thank you for having me. And you can just call me Anna. Nobody has to use that mouthful of a name. It's a beautiful name. And especially now, since I know a little bit about the story behind your Gelbman name. Yes, yes. I think it's... My Jewish father's name. Yes, yes. Yes, actually that's not.

[4:01] His given name either. As a Holocaust survivor, he lost his dad and was adopted. Our original family name should have been Rosenberg. Rosenberg. Oh, wow. Yeah. And I'm sorry that it's not because it's a lovely name, but it is what it is. So anyways, yes. Just call me Anna. Just Anna. So Anna, I know that you have a personal story related to being a caregiver, which had you then transition into doing what you're doing now. Tell the people who are watching or listening today a little bit about your backstory so that we can understand kind of how you decided to start this platform that you've started. Okay. Well, I'll start prior Prior to my experience with the caregiving community, by profession, I'm a professional writer, editor, and magazine publisher. So basically, that's a journalist, although I can write for different things, content writing, copywriting, whatever. So that's my background, is in the English language. And so I've been doing that for quite a few years.

[5:16] Then about, I don't remember how many years ago now, six, eight years ago, my mother needed more care. After my father passed away, my mom quickly went downhill. We weren't expecting that.

Challenges of Long-Distance Caregiving

[5:28] We knew she had some health issues, but we didn't expect her to kind of fall apart. In hindsight, I see that that happens a lot. We have an amazing capacity to be strong for as long as we need to. And then when the problem goes away, we just kind of collapse. And she was living over 300 miles away from me. And we're five kids.

[5:51] And I was not the closest nor the furthest, but I was the only one that was living alone. I worked at home. So I had the schedule and the ability to bring her to live with me. I also had two of my kids, strong, healthy young men who lived nearby and could help me if I ever needed that for whatever reason. So to make a long story short, I moved her from Virginia down to South Carolina to live with me. And in six months it became very clear that she was heading into dementia and so in addition to her health issues her ordinary health issues I could no longer leave the house and know that she would be safe and we didn't have the funds to bring someone in nor did she really enjoy having I did bring someone in occasionally, but she didn't really enjoy it. She was an introvert. And so the decision was made to seek out assisted living, even though I knew in my heart that mom wouldn't really want that. But it was safety at this point. So we did.

[7:05] And long story short, that particular community was not a good fit for her or me. And it was not a good situation emotionally for me. And so we had to search again for a different community for her, which turned out to be a much better fit. But even then, nothing's perfect. You're always putting out fires. It doesn't matter what's going, it's true when your kids are in school or anything else, everything's perfect. So even though there's five kids, I was boots on the ground. I had a brother out in California who literally couldn't really help doing anything. I had a brother closer to North Carolina handling the money and two sisters, you know, that, you know, did what they did. But I mean, I got very little help. And as you know, for a couple of years, her health declined, her dementia worsened, and I was trying to run a business and she passed away a few years ago. After I got over the main grief, you never get over losing a parent, but you know, quickly we were having an editorial meeting for a magazine that I was publishing at the time. And somebody said.

[8:21] Brought up the fact that it was a women's business magazine. Somebody brought up the fact that there's a lot of sandwich caregivers out there. These women who are full time or running a business and have kids of their own and are caring for their mom or dad or whatever's going on. And she said, I think we should do articles on that.

[8:36] Well, one of the younger people in this meeting, just kind of, you know, typical, someone who doesn't understand something said, no, no, no, we could maybe do a whole special issue about stuff like that. But I don't think we should put that in this issue. And I just looked at her. I'm like, what did you just say? You know, like one of those cartoon double take things. she said it again and I knew I'm like I'm gonna make a magazine for caregivers right there I knew it and I did and so it exists and I do I love the name of the magazine because it is it legitimately epitomizes and I don't know if you did this on purpose or not but it reminds Reminds me as a dementia specialist and coach of retrogenesis, which is the back to the beginning part of, it's a framework called the Functional Assessment Staging Tool. 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, I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know after attending this free workshop.

[10:05] If you'd like to register, message me the word workshop on Instagram or check out the link in the show notes below.

[10:20] And retrogenesis means back to the beginning. So the name of your magazine. Okay. Is reverse. Is reverse. Yes. Of the role reversal that takes place. The role reversal, but it's actually, for me, it was actually more because with the, you know, in light of your mom's dementia, her life was going a little in reverse. And, you know, and so to me, it's almost a double entendre because I'm like, well, you know, I can see both. I can see both sides. So, yes.

family caregiver

Creating the Caregiver Resource Platform

[10:53] And as Megan Dazeen is called Anna. Reverse and the podcast and it is called navigating in reverse navigating in reverse and that's because the tagline of the magazine is navigating in reverse when parental parental roles change so we wanted the podcast to stand out from the magazine and i just have to say right now the magazine is no longer in print we quit doing that cost of paper went up by 80 percent after COVID. So I said, we're done with this because it's too expensive. So it's a digital magazine. Anybody can go online. You don't have to try and find one of these somewhere. It's there. And I'm sure you give your listeners, you know, the website and everything. All of that will be in the show notes of today's episode too. But I get the digital magazine and I love reading the articles. I think they're very informative.

[11:49] You've written one or two. I have written one or two. That is correct. But so you decided based on that young, wet behind the ears human who hasn't been walking in our shoes yet. But guess what? She immediately, she's an only child. She was the first one to subscribe to the magazine because her parents are divorced. She's an only child. She goes, I know this is going to be me. I'm looking at this down the road. She was my biggest cheerleader at the end. Well, that's wonderful. And so you decided to start the magazine. What was the reason? Why? What was the purpose of the magazine?

[12:32] Well, I don't like to moan about how hard being a caregiver is, but it is hard, especially when you don't have help around you, when you're doing it all. Even when somebody lives in an assisted living community, you're the one that has to go over there and visit and take them to the doctors. I mean, it's a lot. And so I remember I remember sitting in the doctor's office one time with her in the waiting room. And there was probably something that most of your listeners have seen because it's national. There's copies of them everywhere. It's called All About Seniors. It's a directory magazine in almost every doctor's office. And I was like, oh, my gosh, here's my saving grace. This is probably what I'm looking for. And I grabbed. There you go.

[13:18] I grabbed it and took it home. And as I flipped through it, it was just very overwhelming to me because it's really just a directory. It wasn't giving me information about certain things. And I didn't even know what I needed information on, but I wasn't looking for a directory. So to me, you don't know what you don't know. Law attorney or a specific service, it's there and you have choices. It lists those, but I didn't know what I was looking for.

[13:47] And so I remembered that when I was having this epiphany during this editorial meeting. And I said, I'm going to be the resource that when somebody goes to the doctor's office, at the time it was print, I want this magazine to be the one that people pick up and read and take home, that they steal it from the doctor's office. It's a good goal not very that was my goal but it's a it's a good goal for people to want to have it yes and so the launching off thing was I wrote almost all the articles or I got friends to write the articles about things that I had experienced because in my three whatever years of caregiving our family made a lot of mistakes or we were confused about some things and in this particular arena, if you make a mistake, it's hard to correct it. We moved her to one assisted living facility. It was a mistake. And in my heart, I knew it from the get-go, but I wasn't the POA. I only had a voice, but I wasn't able to make that decision. My other siblings did.

[14:59] And it cost us a lot monetarily, physically, emotionally, mentally to move. Or as you know, every time you move a senior, I mean, that's why I don't move out of here. I'd love to go live at the beach, but I don't want to build a new community. I don't want to leave my, it's just, it's traumatizing. So it was very difficult. It was a mistake and you can't come back from that. You can correct it, but it brings on other problems because she had to say goodbye to a few friends that she had made over there. And it was, so we made a lot of mistakes like that, or I personally made mistakes and, or I didn't realize there were resources. I didn't realize there was help or different service. I just had no idea because I was so busy running my business and caring for my mom. I just didn't know. Right. So now, not that I know, but I know where to go to find the information. I find people like you and have them write about the things they know or come on to my podcast and talk about the things that they know with the goal of, if I can help one person not make a big mistake, like I made my job here is done because it was, it just left me.

Overcoming Mistakes in Caregiving

[16:13] Feeling very guilty in the end after she passed. We made too many mistakes because of lack of information.

[16:20] I find it interesting, you know, that a friend of mine recently told me, you can't Google what you don't know. Exactly. So, you know, and this is one of my biggest frustrations with the healthcare system right now is there's so many physicians who either don't want to diagnose a person with dementia even though the family can see something's wrong the family's telling the doctor mom's not functioning you know all of the the information is there but either for because they don't feel competent to make that decision because you know diagnosis because it is a difficult diagnosis to make, or because the physicians either feel like, well, there's nothing we can do, so therefore I'm not going to diagnose it because there's nothing we can do. I just think that that's a terrible mistake for doctors to be making, because now a family who doesn't have a diagnosis doesn't even have a way to go Google it. Like they don't have- It's so interesting because we had the opposite experience. I knew that my mom was having memory issues. There was a problem.

[17:41] And so when I talked to her primary healthcare physician before we went in, I let her know, I want to talk about this. And so I gave her the signal because I would go into every-

[17:52] Appointment with her, I mean, into the room with her. And I gave her the signal. And there's this little 10 question test they give up. It's very simple. What day of the week is it? Who's the president? And if you miss so many certain questions, that's a red flag. And so she took me into the next room. She said, yes, there's a problem here. And I'm going to refer you over to the USC School of Medicine.

[18:20] One of the schools of medicine. I don't know if it was MUSC or whatever. And then we got an appointment with a neurologist. I chose not to go the full diagnosis route. It would have been a test and confusing. Just knowing that there was a problem was enough for me. And I didn't need a full, I knew she didn't have Alzheimer's. There was none of the anger there. There were certain things that I could just, she was manageable to me. But my doctor was very, she didn't diagnose her, but she pointed me to where I could get a she saw the problem so that's really interesting because my experience was entirely opposite that's so sad so for example what happened with me three years before I actually got a diagnosis of mild cognitive impairment for my dad I noticed the first signs of his cognitive loss he was scammed out of two $500 gift cards through, you know, somebody who, whatever. And then he...

[19:26] About two years after that, he got sick. So this has been about four years now. He got sick. And I finally was able to get into his MyChart. And in his MyChart, the doctor legitimately asked him, has anybody said you're having trouble with your memory or remembering things? And my dad said, yes. And they asked who? And he said, my daughter. And then nothing further. Nothing was done for two years until I got into his medical records.

[19:59] And, you know, he ended up in the hospital. He'd had COVID, was cuckoo for Cocoa Puffs confused. That's so scary because the doctor knows this man is driving. Oh, for sure. I had to fight. I had to fight the doctor. I had to fight my dad. I had to fight the specialty center. It took me a year from the time I finally got the doctor to say, okay, we'll send him somewhere before he was seen at a specialist. When we saw the specialist, I legitimately got a diagnosis and no follow-up paperwork, nothing that even was given to my dad to say, you've just been diagnosed with mild cognitive impairment. Impairment, and I'm a healthcare provider, right? So they didn't even give him a binder or a piece of paper or a booklet or anything that says you've been diagnosed with mild cognitive impairment, and this is what it means. Nothing. With some referral, like some references, here's some places you can

Frustrations with the Healthcare System

[21:07] go for more information. Nothing. That's what I'm talking about. Exactly. That's an example of the kind of stuff I'm.

f 1

[21:15] I don't mean to brag, but I'm a pretty sharp cookie. Oh, for sure. And I know how to find information. But when you don't know what you don't know, you just, like you said, Google, you can Google till the cows come home, but Google's only going to tell you what Google wants you to know. Right. And it doesn't give you, it's almost like drinking water out of a fire hydrant. Yes. you get how many thousands of websites well plus the top five are people who paid to be there when you go to right you know looking you know if you google you know i need assisted living for my mom the first thing that what is the first thing that pops up sponsored a place for mom you know these different places and the the the places that they're going to sit when you go on to those websites, and I don't mean to be critical of them, but the only places listed on those websites are people who paid to be on those lists. Exactly. So some of the best communities or services are not even being listed there. They just have better search engine optimization.

[22:32] Google's a big scam. I mean, it's very helpful. I like it, but it doesn't really help you. And so I found out, oh, guess what? There's actually people who live in my community who have looked at all the assisted living facilities in the area. They've vetted them. They know all about them. If I just tell them what my mother's condition is, they're going to take me to the ones that fit my budget, fit her needs. It's like a real estate agent. did. I'm like, what? Why did I not know that? Why did nobody tell me that? Yep. And part of the reason I think nobody really talks about these things is because the healthcare system isn't set up for this. The healthcare system is set up to diagnose illness. It's not set up to provide resources for caregivers. It's not what it's been set up for. Even at the specialty place, the social worker. And the VA, they're just as bad. It's so full of bureaucracy that it's hard to leave and so much noise going on there.

Providing Resources for Caregivers

[23:41] So my point is, I want to be someone who can cut, not me personally, but I mean, I want the magazine and the podcast to be a resource for people who can on their own free time, just sit down and listen or read.

[23:56] Hey, we hear you. This is a problem. And I know you don't know where to go for help, but guess what? There's help over here. Go check them out. And I can't say I endorse this person or this service. I don't do that. I'm just saying it exists. It's up to you to check it out. Yep. And we have a lot of commonality in our podcasts, I think, because I bring people like you onto the podcast, you bring people like me onto yours, but we're, we're serving similar, but different audiences. Like for example, I'll bring in, I'll interview people who have a product that's something that is really helpful for somebody with dementia, like the pill map, right. Which is a product. So we're very complimentary of one another and, you know, putting resources in people's hands and being able to give them the ability to then go find it in a curated fashion, which is one of the biggest things I think a good podcast, your magazine does, is take this vast body of knowledge and put it into a curated place so that that a person who is already overwhelmed from being a caregiver doesn't have to go do all of the legwork.

[25:17] For example, when my dad came out of the hospital, my mom cannot use a cell phone anymore. And I recognized we needed to get lifeline of some sort. We needed to have some sort of an emergency system in the house. And I'm a healthcare provider. I'm not an idiot, it, kind of like what you said, right? And I was overwhelmed when I started to Google it because of all of the vast number of choices. So you have somebody with decision fatigue from making all these thousands of micro decisions. I think that's one of the biggest challenges caregivers have is just making all these decisions for other people. That I had a hard time picking a lifeline. I am very excited to announce this next part of our journey together.

Ask the Dementia Coach Segment Launch

[26:13] Once a month, on a Thursday evening, I'm going to do a segment called Ask the Dementia Coach, where you can actually come into a coaching session with me and other people if they register for the same time so you can feel what it feels like to actually.

[26:29] Music. on your own and may feel like you're at the end of your work. And in order to help serve you better, I wanted to open up this opportunity once a month for you to register for a free Ask the Dementia Coach segment. Like I said, it will be Thursday evenings, once a month, six o'clock Eastern time in the evening. And the segment is called Ask the Dementia Coach. So if you're interested in signing up for that, The link will be in the show notes below, and I look forward to seeing you on one of these special sessions.

[26:37] Have dementia coaching. The reason I'm doing this is because I know so many of you guys are struggling

[27:31] Well, I will say that, yes, I think that our podcasts are very complimentary. There's probably nobody that's tuned into yours that shouldn't be tuned into mine. Everybody who's listening, you should move on over and also be part of reverse because you're caring for somebody. We also, though, aren't just addressing that audience of the care. I tell people when I speak publicly or anywhere, I'm addressing people who are looking at caregiving down the road. if you're calling your mom once a week just to check on her you're already a caregiver.

Identifying Caregivers

[28:07] And that's the and i'm so glad you bring that up anna because so many i think a lot of times one of the biggest barriers both of us have in reaching people is that caregivers do not actually identify that they're a caregiver right but you're a hundred percent just dad right Right. Because I was calling my mom for years, not to check on her, but to take her temperature. My dad too. What do they do? And I don't actively think about it, but I know that's what I'm doing. Right. But if you're checking on them or if you're picking up meds or if you're outside leaf blowing because dad can't- Reminding him to do something. Yes. You're a caregiver and people do not think about that as being a caregiver because they're not necessarily physically providing care. So I think it becomes very easy for people to just say, oh, well, I don't need that yet. But they really do because the earlier people start to educate themselves, the easier the journey is. So that's the other tack that I take. I I talk to the generation, I say my audience is age 35 to 75 or 80.

[29:22] Whatever you're concerned about with your parents, you need to teach your kids. They need to be thinking about that now. And if you don't have a will, if you're 40 and you don't have a will, you better get a will. If you don't have a living will, you better get a living will. Because, I mean, we talk about these on my podcast. I had a lawyer on her podcast just dropped the other day, an attorney, who was talking about all these critical documents you need. And I said, I want you to tell some horror stories about people who died without wills or were left incapacitated without an advance directive. And I said, just scare the pants off of them. And so I'm kind of writing an article about that, too. It's like you don't want to be the topic of a horror story. But most people don't want to talk about this. They think they're invincible. I can worry about a will later. I can worry about a power of attorney later. No, you can't. The moment you're 21 years old or 18 and you can sign the legal

Planning for the Future

[30:28] documents, you need a will and you need a power of attorney. My daughter and son and all don't know it, but they are coming over for Easter weekend and they are going to be named my agent. You guys, here's the piece of paper. We got to talk about this.

[30:46] Absolutely. And people, you know, people realize to an extent, nobody's going to make it out of here alive. However, they don't want to say it out loud. To me, I don't understand that fear of talking about these things. And almost everybody's. It's never scared me.

[31:02] I don't know if it's because I'm comfortable. I know where I'm going in the end. But I don't think it's that. I'm just a truly logical person. It makes sense to do these things. Putting it off does nothing for you. And the mess, like life insurance and a will, all these things, those are for the people you leave behind. You cannot leave a mess for them. And people do it all the time.

Unveiling Caregiver Trauma

[31:28] Yeah, for sure. For sure. So earlier, before we started the conversation, you and I were talking a little bit about something that I think is important to bring up. And that was what you termed the experience after being a caregiver and what that kind of felt like for you. And you've coined a great phrase for it. So I'm going to have you kind of tell people a little bit about that because I think it's important for people to recognize that, you know, caregiving is hard. It doesn't have to decimate. And there is a period afterwards that we have to go through.

[32:20] In order to heal. So do you want to kind of touch on that a little bit today? I can, and we can take a deeper dive if we have to another time if you want to. I was very surprised one time when I was at a networking event for a bunch of senior care industry people, and it was a small gathering, and I was standing in a group of maybe four people, and I don't remember what I was talking about. I mean, we're all sitting there having, you know, a glass of wine and a charcuterie boardroom just chit-chatting and I was talking and one of my friends who was in this small group when I was done turned and said to everybody else Anna has caregiver trauma and and I was like I didn't even I didn't say anything but it registered I'm like what you know and the conversation went on but I don't remember anything else that happened after that. It was just so shocking to me. So I went home and nothing really happened, but it kept stirring around in my head. Like, what is that? And so I called her up one morning. I remember I was done brushing my teeth. I'm like, I'm just going to call her. And I said, Melissa, do you remember saying this to me? She goes, yeah. Oh, I'm so sorry. Did I hurt your feelings? I'm like, what is that?

[33:36] What is caregiver trauma? She goes, oh, you didn't know you have it? It? And I'm like, I don't even know what it is. What do you mean if I didn't know what it is? I said, what are you talking about? And she said, oh my gosh, I thought you knew. I said, you know, we're stopping this conversation right here. You're coming on my podcast and we're going to talk about this. Raw, I said. So we set it up and we did. And anybody that goes to my podcast can hear the whole story. It's called- It's a great episode. I've listened to it a couple Yeah, it's called, maybe you can put a link to that specific episode, I'll help you do that. It's called A Caregiver's War Story. And the ironic thing is, is.

[34:17] My mom was easy to care for. She was super easy. She was an introvert. She's very gentle, just the sweetest. I mean, anybody will tell you she's the sweetest lady in the whole world, but I came out of it traumatized. And when we got, I won't give the whole story away, because I want people to listen to the whole thing. It's interesting. But when I got around to asking, I said, what did you see in me? What are you talking about? And she said, And every time you talk about your personal caregiving experience with your mom, your whole demeanor changes. Your eyes, you know, you get teary eyed. You don't cry, but you continue. Your voice cracks, your body language, you tense up, and there's a level of anger in you.

Facing Personal Trauma

[35:02] And as she was saying, I'm like, I know exactly what you're talking about. And I hate it, but I never, I just never was, I don't know. No, I just never knew until you're saying it's like, oh, okay. Yeah. You see, mine was boarding school.

[35:22] So when I was 12 years old, my parents were diplomats for the South African government. And they were moving to Sweden and they put my sister and I in boarding school. And boarding school was extremely traumatic for me. Extremely. Like the whole thing. A sense of abandonment. Just everything that I went through. I was younger than my peers by more than a year. I was left-handed and right eye dominant. I sucked at sport. I was not the social butterfly. I spent the first year in boarding school bawling my eyes out, which was not a great thing to do in a boarding school where everybody else seems to be adjusting. And for years after that, I was dealing with that, which was very similar to what you're describing about, you know, just that underlying anger, that underlying just, I could not have, I was not capable of having this conversation without bawling my eyes out. Right. So I think it's important to say, though, that I wasn't angry at anybody.

[36:47] No, not you either. I was angry at the systemic issues that make the caregiving industries. My attitude basically was, I'm taking this industry down. And you and I are both on the same page with that. It shouldn't be this hard. Right. But once I started, first of all, just realizing that you are, and trauma is simply.

[37:14] Something big happens in your life, something negative, a negative experience that kind of jolts you. That's all. And it doesn't have to be long lasting. It doesn't have to leave deep scars. But I mean, we all experience trauma. Once that came to light, that's already one step in the healing. That's the very thing that you recognize and accept the fact, oh, I'm a mess here. I got to deal with this. And so me being me, I went to the Lord and said, I don't want, I know you didn't give me this magazine to take people or companies down because I got advertisers. I got to let you answer. I said, so I need your help with this. I don't want to be angry. I don't want to forget. I mean, otherwise I got nothing to write about. I mean, this is going to take a long time for people to change their attitudes about how things are done, the health industry, the senior care industry, all of it needs to. but you don't have to go at it with your fist flying and tears in your eyes, tears of frustration. And I will say, I can have this conversation with you and I'm not doing any of those things. So I've come a long way. I also want to say that's very different from the guilt I have to work through for not being what I think could have been a better, I could have been a better caregiver. But I think I only think that because I'm smarter now.

[38:40] I didn't know what, I didn't know that. I did the best I could. If I had the information that I have in this, at the time I would have taken

Changing the Narrative

[38:50] better care of my mother because I would have had tools to do it. How sad is that? That is very, very sad, but what a mission. And I think that's the other place where you and I are very, very similar is we both come from a mindset of changing the narrative. Yes. Changing the narrative of caregiving, changing the narrative related to dementia, dementia caregiving, changing the narrative and not just staying with the status quo. Right. Things have to change. We have more caregivers. We have more. There are resources out there for sure. But finding those resources, putting those resources in the hands of people who are actually boots on the ground providing the care, that's where a lot of that gap is. And people are expecting the healthcare system to fix it for them. The healthcare system can't even fix itself. Right. Exactly. How can it fix you? Absolutely. So, you know, that's where I think this is what I want people listening to the podcast to understand is that the healthcare system isn't going to fix this. Right.

[40:01] Resources resources like the magazine resources like the podcast are a part of the solution it's not the whole solution but it's a step in the right direction of getting better resources in the hands of people who actually need it and so on a i think for the for i'm so glad that that we We started the conversation on the caregiver trauma. And I do think that spending a whole episode and just talking about, about what that means and so on is really going to be what we need to do. But I wanted to bring it up today because I think that's one of the big reasons why your magazine is so valuable to people because of the recognition that you cannot come at it from an angry perspective. Because I'm like you, I'm like, I'm like, I want to take the healthcare system down. I want to take this beast down. Don't we all?

[41:04] I mean, whether you're a caregiver or not, it's horrible. Well, and you know, and, and I'm still right in the thick of it. And one of the biggest things that has been my realization. And, you know, when I listened to that episode, I'm like, yeah, I can see myself there, you know, is the realization that as an occupational therapist, because I actually still do teach therapists, right? I have a platform now where I'm going in and I've not in my area, in my field of expertise, I'm the first one who's talking about out, the burden the healthcare system is putting on families by doing what they're doing. And so I think we're going to change the narrative over time, but it's going to take time.

[42:01] I do a free workshop once a month. And in the free workshop, I ask people, does your doctor ask you about your stress levels, like caregiver stress? There are assessments, they're standardized assessments evidence that same doctor who did the test on my mom she was my doctor too and she pulled me aside in a separate room when i was there one time and she had that conversation with me she goes you are so stressed out um.

[42:33] It was great. I was totally blindsided, but very happy that she took the time to do that. It was amazing.

[42:43] She's not even practicing with that group anymore. And that's a step in the right direction. And a lot of people tell me, yes, their doctor asks them about their stress. And then my follow-up question is, do they actually do the assessments with you? Do they have you fill out the standardized evidence-based assessments that are available that will tell us where your stress is. You know why they don't do that? Because they're only allowed to give you 15 minutes of their time. So I have combated that by, I have a direct pay doctor. She talked to me for an hour for so many dollars a month.

[43:23] And to be honest, that's the way I go as well. Um you know all the time in the world and she texts me and we email she's awesome awesome and that's the and so you bring out something that's really important for people who are listening to this program who might resonate with with me related to dementia caregiving is the dementia coaching i mean a concierge level or a group coaching program where you have direct access to the person who is helping you is different than just listening to a podcast or just going to a website and researching it on your own or going to a support group. All of these different things play a role, but there's this misconception because I've just recently gotten this a lot, but this should be free, but this should be free. I'm like, well, when you go to the doctor, it's not free.

[44:20] And yes, your healthcare is paying for Or you to go to the doctor. I'm using my time to talk to you. Exactly. And the 30 plus years of experience to be able to take your problem and distill it down into a solution. Plus, I've learned in my many years of being old that when you take things away for free, like when you go to a conference and they give you these bags and you go around and cut your pencils and you throw all that in the trash. The stuff that they give you for free has no value to you. So if you don't charge, they're like, oh, well, I don't have to show up for my appointment. Who cares if I attempt the group meet? They just blow it off. But if they stay for it, they're going to show up. Right. Absolutely. For sure. So, Anna, we need to schedule an entire episode just on caregiver trauma. It might be worth bringing a mental health professional in on that one. Well, for sure. But maybe talk to you first and then we'll talk to, you know, or maybe we can do like a panel.

[45:23] I haven't done a panel. Okay. Well, I'm willing to talk about it because any insight I can get about it, we have not addressed it in the magazine. I don't feel qualified, you know, just because I recognize that I had it. I mean, I can tell my personal story, big deal. I think mental health professionals need to be talking about this more because my attitude to my friend, Melissa, who brought the topic up was, if I didn't know about this, and I've I've been doing this magazine for a year. If I've never heard about this, who else hasn't? This needs to be talked about.

Prevention and Awareness

[45:59] It does for sure. Absolutely. Thank you for bringing it. Thank you for giving me a platform to talk about it to kind of. Oh, for sure. I think, I think it's very, very vital that we talk about it because my hope in talking about it is we can get people to not necessarily have to experience it. Like, wow. Yeah. Being more aware that if we, you know, and you did a phenomenal job with your mom.

[46:27] So it's not because the care wasn't there. It's the emotional responses that we have from this marathon. And the answer to that is self-care. We promote self-care all the time because I tell people you cannot pour from an empty cup. If you're not taking care of yourself, how are you supposed to take care of your mom or dad? Yep. And I wasn't taking care of myself. I put on a massive amount of weight. My hair went gray. You know, just I wasn't exercising. And just I went to pot because I was, you know, you're living a life for somebody else. I was living two lives, hers and mine. And hers took precedence. Plus, I had two kids under the age of 12. You know, right around in the early 20, 19, 20, 21, 20, they still needed me too, even though they were a help to me in certain ways. It was a lot. It is a lot. And that's one of the things that in the, in the group coaching that I've started doing is I've found a platform, an app that we can use that actually tracks caregiver stress every single week.

[47:33] And those, those scores are benchmarked, which means that at a certain, between a certain range, around a certain range, it's like I've been able to divide it up into almost like a stoplight, like red, yellow, and green. So based on a person's score, I can tell, oh, this person's still okay. They're in the green range. They're not super stressed. They're coping, they're managing, and we can work through the day-to-day struggles. But as their stress starts to increase, okay, now we're in the yellow zone. We've got to come up with a plan because Houston, there's a problem. You're getting ready to burn out. And the people that are already in that red zone that I'm like, dude, we got to fix this now.

[48:19] I think it's also important when we have another conversation is to talk about how this trauma can manifest itself in different ways.

Manifestation of Trauma

[48:27] Not everybody's angry. I was angry. Other people might be depressed. Other people may go just have brain fog they just like checking out you know we need to that's why i think it's good to have a mental health professional in the wings because i'm not a professional i'm just someone who experienced something and had the light turned on but i would love to take a deeper dive into the topic oh for sure and maybe between the two of us we can see if we know somebody that we can bring on to the podcast and maybe we can do like a a little episode like like a panel the the three of us, and do it and just kind of talk this through a little bit more to better prepare people. Because I think if people are aware, then you can't Google what you don't know. You can't prevent what you don't know. Right, right. You know, you can't prevent.

[49:18] Caregiving is challenging. It doesn't need to decimate. How do we make it easier for people? We keep giving them more and more resources. And this is another resource. It's a topic that is not being talked about. I had never heard the term before. Never. So between the two of us, we're going to keep talking about it. Okay. So Anna, tell people how to connect with you. Okay. You can find the podcast and the magazine at reversemagazine.us. It's not .com, it's .us. We're on Facebook, Reverse Magazine. We're also on LinkedIn.

[49:58] You can just Google us there, Reverse Magazine, Reverse for Caregivers. We're on both those places. We're also on Instagram, but we're not big there. We're not picture heavy. And really, the website's the best way because you can contact me there. And I'm pretty sure my email's on there. If not, there's a contact page and that goes directly to me. And then we'll put all of the information in the show notes. And if you'll send me the link to that specific episode, we'll put that in the show notes as well. I can do that. No problem. Yeah. In fact, this was delightful. Yeah. Thank you so much for coming on to this program. I'm very excited about opening up this conversation on so many different levels. I think, you know, putting resources in people's hands is the best thing that we can do.

Supporting Caregivers

[50:44] And there are multiple different ways of doing this. But even further than that, I just really appreciate the whole conversation related to, you know, how do we protect caregivers, right? The whole caregiver trauma part of it to me is, okay, now that we, both you and I, know about this, how do we prevent it from happening? What can we do? What structures can we put in place? How do we continue to support and undergird people who are family caregivers of somebody living with dementia or just a family caregiver? But how do we do those things and give them the support they need so they don't actually end up burning out?

[51:28] Yeah, burnout's another topic.

[51:31] It's different from trauma, right? Just caregiver burnout, you know? I'm actually going to have a lady from Australia who is a nurse come talk about the 12 stages of burnout. And then after all of this, this is very different from grief. Once it's all over, because the grief didn't hit me for like almost two years after she died. I mean, full-fledged grief. That's another topic. That's crazy.

[51:58] And I actually have a friend who's a a doctor who wrote a book called Joy in Grief, and he's on my list to have on the podcast as well. He's a biblical counselor.

Addressing Burnout

[52:10] So I'm slowly going to be working through some of these topics with people and for people. Okay. Well, maybe we can share guests or something. Yeah, for sure. If you want to be on the podcast, we're always interested in caregiver stories. Again, you can just contact me through the website and find out how to be on the podcast. We're always looking for people to contribute to the magazine, contributing writers. And I have a lot to say about that, but I'll just leave it at that. So I'm swimming around. So what people need to do is they need to go to the website. They need to decide how they want to connect with you. I would encourage you if you are a family caregiver, if you are interested in being on Anna's podcast, it is a wonderful podcast. She's a great interviewer. It really came out very, very well. And then if you are a family caregiver that is working with somebody with dementia, you're super welcome to reach out to me. I haven't had family caregivers on yet because they're kind of shy still.

[53:11] But the stories are the most important thing. I mean, most of what I talked to you about today were stories that happened to me or that I know. And that's how people take in information. We want to hear. In other words, when we hear these human interest stories that are on the news or on a pipe of some, it's because we relate to them because that could be us or that is us. We relate to that. Yeah. So rather than having, you know, some professor come on and talk about, you know, the biological reasons for dementia, you want people who are actually experiencing the dementia or caregiving for someone with dementia. Those stories are important and they speak to the heart. And those stories are their stories. And it gives us a platform and an opportunity for people to share their lives.

Sharing Caregiver Stories

[53:58] And, you know, it creates community. So reach out to Anna, reach out to me and see if we can get one of you guys or somebody on our podcast. We'd be very happy to have you guys. And Anna, thank you so much for being here today. This was super fun. Well, thank you. I appreciate it. It was a pleasure to be here and a pleasure to see you. I don't get to see you very often. No, we don't get to, well, at least this time I didn't have to drive an hour and 45 minutes to get there. Right. All right. Well, thanks again. And I can't wait to come back and we'll have you on our podcast again soon. All right. Thanks, Ms. Anna. Okay. Take care.

[54:35] 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 flight takes off.

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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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