Month: April 2026

Welcome To Patty’s Place

SPEAKER_00

0:16

Welcome to Patty's Place, a place where we will talk about grief, dementia, and caregiving. I named this in honor of my mom, Patty. Uh, I'm your host, Lisa, so we will talk about all of these things as well. And hopefully you won't feel so alone today. So grab your cup of tea, your cup of coffee, or a glass of wine if you're having a really bad day. And today I'm very excited. We're gonna talk with Amy Shaw. She is the founder of betterdementia.com, and she's a dementia clinician, educator, and author of several books, I believe. Is that correct, Amy?

SPEAKER_01

0:50

Um, one that has been published to date and one that we'll be publishing next year.

Why Dementia Education Changes Everything

SPEAKER_00

0:55

Okay. So we're gonna talk about I'm I'm very excited to talk about this. So um why do you think understanding dementia changes everything for families?

SPEAKER_01

1:07

It is the foundation on which families really navigate a very confusing journey.

SPEAKER_00

1:13

Yes.

SPEAKER_01

1:13

Dementia is one of the most complicated journeys of aging, and families are often navigating this journey without a map. That's very and what is happening next, it all just feels very chaotic and scary.

SPEAKER_00

1:33

It it really does. It really does from experience, because there is a lot of information out there, but yet you don't always know where to find it. So what would you say? What what do families wish they had known earlier about the dementia journey?

SPEAKER_01

1:50

Many of the families that I work with, after I've provided them my educational framework, tell me, and also I teach strategies that align with where a loved one is in their journey. They say to me, Amy, I wish I had met you years ago. Because they have been navigating this, again, this very complicated, emotionally heavy journey, often, in a way that many caregivers do. They treat their loved one as though they haven't changed.

SPEAKER_00

2:20

Yes.

SPEAKER_01

2:21

And until they understand what is changing in their loved one's brain, kind of like if you knew that somebody had a broken arm, you would not ask them to carry the groceries in, right? Right, right. And essentially, dementia is breaking different regions of the brain. And when caregivers understand that, they can work backward from behavior to brain and understand where they are in their journey. And then they can align with that. And it doesn't make the disease change, but it makes the caregiving journey change for the better.

Why They Cannot See Decline

SPEAKER_00

2:58

I would agree with that a hundred percent. Uh uh, I know with my mom, well, my mom didn't get diagnosed till very she was already moderate to severe. She just she refused to, I tried to get her go to the doctor, but she just she just refused to do it. Um, now looking back, because then I did research on at the Alzheimer's Association website and things like that, realizing that was part of her dementia journey. She she wasn't in denial, that was just that part of the brain. Can you talk about that a little bit? Because once I began to understand that, for lack of a better term, that her brain was dying. You know, different parts of her brain were shutting off. I I could understand it better. Can you talk about that a little bit to help people understand? Because you can't see it. You know, it's not like it's not like you know, when you have a terminal illness, you know, people understand cancer or they understand uh those those types of diseases, but dementia, they they don't get it.

SPEAKER_01

3:57

So you know, dementia is unique in that that way. I have helped people who are um getting to the end of their life with all of the diseases that you've mentioned. And the reason that I got involved in helping families with dementia was this very issue. Dementia is unique, it does not show itself. In fact, I often say people with dementia do not go around waving their memory and cognitive incompetence flag, right?

SPEAKER_00

4:24

Right.

SPEAKER_01

4:25

There's actually reasons, the the structure of the brain, its architecture, um, does not have a sort of a safety valve in there that says, hey, I'm failing. And so people who are experiencing cognitive losses in different regions of their brain, there's really no feedback to provide them with that insight. And so what caregivers see is very different from what the patient with dementia, the person with dementia, experiences. They literally cannot remember sometimes that certain things have happened, like car accidents or getting lost in a grocery store, right? And if it didn't happen to you, then how could you be informed by an experience that did not happen, right? Right. And once caregivers understand that that person's experience of their life is so vastly different or can be so different than our experience, they can move from compassion just in the same way that when we see that somebody has a broken leg or broken arm, we are compassionate toward them, right? We don't ask them to carry the groceries in. So what I teach caregivers is all rooted in uh brain anatomy. Um, I studied a field called psychobiology, okay, which is how the architecture of our brain results in our behavior.

SPEAKER_00

5:50

Okay.

Patterns In Dementia Beyond Stages

SPEAKER_01

5:51

Study child development, language acquisition, um, primate behavior, and humans are a primate. Yes, and how we organize right into society and families and relationships and all of that. And it really has come in handy because dementia is um all of that brain development in the unraveling of it. And so when I work with families, I help them understand the different regions of brain and the different cognitive or physical or emotional or memory functions those regions are responsible for, and how failures in those regions show up in our daily lives, and very importantly, how different regions of cognition and brain function underpin our daily living tasks.

SPEAKER_00

6:44

Okay.

SPEAKER_01

6:45

And then we can identify from the failures that we are seeing in our loved one. Oh, we are here in this journey. Dementia often feels very unpredictable, but it is not. There are patterns to dementia. And when we think about the different regions of brain and how they fail, um, it's actually rather, I don't want to say easy, but it's not as complicated, I think, as a lot of these staging systems that talk about mild, moderate, and severe.

SPEAKER_00

7:20

Yeah.

SPEAKER_01

7:21

That language is very vague for families.

SPEAKER_00

7:24

It it really is, because uh trying to understand like where where my mom was. Well, by the time my mom got diagnosed, they said she was in moderate to severe, which I could believe that because I had noticed years before different things that were happening with her. And at that point, she didn't know who my dad or I were. You know, that's when I was like, okay, we have to do something here, you know. Um but when you were talking about that, when my mom towards the end, when we had hospice come in, the hospice nurse explained it, like, you know, different sparks of the brain would shut down. And she felt my mom was highly unusual because my mom was very mobile given the stage of her dementia. And it I witnessed it that day. My mom was in the bathroom, she was standing at the counter, uh like at the sink, and all of a sudden, it like the brain shut off and she couldn't make those turns anymore. You know, she couldn't figure out how to, you know, and the nurse was there luckily that day, and she's like, yeah, she's like, we're gonna have to get the wheelchair, we're gonna have to do that, you know, that that part has finally, you know. And it is true, you know, a couple things. One, it always makes me so angry when people are dealing with dementia patients and they think they're doing it on purpose.

SPEAKER_01

8:42

Sure, yeah.

SPEAKER_00

8:43

It it it it does because I'm always like, they're not doing this on purpose, you know. Yeah. And I don't know how to break that for people to help. I I think part of it is from the caregivers because it's so hard to let go of that person you knew.

SPEAKER_01

8:59

It is, it is, and one of the the things that I help families understand is that when you're not moving from a place of accurate understanding of what is happening on the dementia journey, we humans are sense makers. We always want to live in the why, right? Yes, and in the absence of understanding, we still explain things. And so, just like you said, I work with lots of families who I listen for this misunderstanding and this mistranslation, and it comes out in language just like you said, my person is lying to me, they're manipulating me. I don't know why, X, Y, or Z. And when I help provide that education piece, right, to help them understand what the brain is responsible for and how it shows up when it fails, they can then move from, oh, that actually isn't their fault. They are still functioning with a brain that is still doing its job for that person, but without some of the structures in place anymore that they had years ago. One of the things that's really um uh seductive, I guess, about the dementia journey is that your person still looks like the person you've always known. Yes. Right? Yes. When we interact with children who are growing up, we have a visual cue of their cognitive sophistication and their cognitive abilities. And on the dementia journey, we don't have a convenient guide, a visual guide like that. And so families, caregivers really often treat their loved one as though they are the same mother or father or spouse that they have been, that they have known their entire lives or have been married to for 60 something years. And that's why this journey is so counterintuitive. Right. And until we understand what is breaking and when, so that we can align with those failures, um, it's really very counterintuitive for families. Families often have to learn the hard way through a lot of trial and error. They often become the bad guy in the relationship because they do have to step in and navigate and manage certain aspects of daily living to keep their loved ones safe. But they're doing it in a way that they've always interfaced with this person, and that doesn't work anymore on the dementia journey.

SPEAKER_00

11:31

No, it doesn't. My dad, it took my dad quite a while to understand. And he finally ended up saying he was trying to be logical to an illogical problem. And I'm like, yeah, you you have to once once I understood, I was like, you you have to enter her world, you know. Like my mom, I I tell the story that my mom always thought my dad was stealing her money. You know, he he wasn't, and I know that's very it's very common in dementia. And my dad even like wrote out this whole like piece of paper for her to explain it, and I would explain it to her, and she still would wouldn't believe it. And what worked was I would tell her, don't worry about your money. I live across the street from the bank, me and Annie, her dog, we could go get your money at any time. And that made her feel better. Yeah, you know, sometimes it's the simplest things, you know, for people. And it it is hard because you know, I would look and it was my mom, but but it wasn't, you know. Right. Yeah. And it's so hard to understand that. So how do you like caring for a loved one? How do you balance that managing the work life relationship? Because it it's difficult. It it really is.

Early Warning Signs Families Miss

SPEAKER_01

12:45

It really is. The caregiving journey, um, which becomes a caregiving journey much earlier than most people expect, and that I think the medical community really even acknowledges. I want to go back for a second to something you said. We were talking about the mild, moderate, severe, and that your mother's diagnosis came when she was already in the moderate to severe. I suspect, like many of my families that I work with, and even my own family, my mother also has a diagnosis of Alzheimer's disease. And she was diagnosed at the mild cognitive impairment stage. And yet within several months, she started having significant failures in finances and medications that had she been living alone, she could have done some real harm to herself. Oh, okay. And fortunately, my dad is there, right? And I am her primary provider, basically. And our family is fortunate that I know exactly how to translate the failures into okay, what do we do next? And many families experience mild cognitive impairment or even mild dementia as not very mild, right? When families have to step in and navigate their loved one already. And I know myself, I have spent many hours worrying about my mom and worrying about my dad. And I have the framework to understand. If I didn't have an understanding of where she was and what was happening, I can imagine my strain and stress and worry would be exponential. And so the mild and mild cognitive impairment stages can actually be very challenging for families. It doesn't feel mild to them. I'm interested to know what you thought about when your mom was earlier in her journey.

SPEAKER_00

14:47

Well, I had noticed it probably a good five to seven years before she was actually diagnosed. Uh, just little things. Like she would ask the same question over and over again. And if and I didn't, I didn't handle it well at first because I was like, I'd be like, you just asked me that, you know. Or my mom and I would would watch TV, and my mom was one of those people like she loved mysteries and stuff, and she could usually solve it before the end of it. And she couldn't follow like something as simple as a Hallmark movie. And I was like, Okay, you know, and she was a big reader and she wasn't reading anymore, and she just stopped driving. I I think that she probably got lost. Not that she drove a lot, I think she probably scared herself. So instead of saying that, she my dad had bought a new car and she blamed my dad. She just told him, you know, you bought this new car, it's too big, I'm never driving it. You know. Um so I on one hand, I wasn't surprised when they finally, but yeah, I knew something wasn't right. And and when I came to understand, you know, because you want to put this framework in, like you understand different diseases, like, oh, stage one, stage two. But really, like you were just saying, with dementia, they really go through all of them. And it's really hard to put them in stages because you know, one week they could be like, oh, they're okay. And then the next week you're like, wait a minute, they're hallucinating now.

SPEAKER_01

16:14

Right.

SPEAKER_00

16:15

You know, and it it I think it's a fault, it's false to just believe, oh, well, they go from mild to moderate to severe, because it doesn't work that way.

SPEAKER_01

16:24

Yeah, I that's why my um system, I've really never utilized the mild, moderate, and severe because I don't really even know how to translate that for a family. And my work is primarily to help families navigate this journey. And many families in the mild stage do not experience a mild journey because if their loved one has a type of dementia that comes with, like you said, hallucinations, if they are paranoid, um, if they have agitation, physical or verbal, and the the family doesn't know how to interact with the loved one to maintain their well-being, their dignity, their sense of competence, capability, and control, then their journey is not mild, even if their loved one's failures are only in one or two domains of cognitive functioning, right?

SPEAKER_00

17:21

And my mom got very agitated. Like she the I had to go physically get her because at times I thought, oh my God, like she just like hated my dad, like hated him with a passion. Like she thought he was um having affairs and he wasn't. Yeah, you know, but I was like, I gotta separate you two because I'm scared of what she might do, you know.

SPEAKER_01

17:44

Yeah, those are really challenging expressions of dementia. And often caregivers don't have a way of understanding that psychiatric symptoms, which can happen at any stage of dementia, can range from mild to crisis level. They don't have an understanding of how to interpret these behaviors and how to understand them as uh, you know, just like if your heart fails, you we expect certain symptoms, right? Shortness of breath, chest pain. When your brain fails, we expect certain symptoms. And they can be insomnia or agitation or hallucinations. And without that understanding, often families who have experience with a different loved one or relative on the dementia journey that informs their expectations of this journey. And so they come into this new experience with a new loved one and they're terrified that that same thing is going to happen right with their loved one. And there's so much variation here. But dementia is very predictable. There are cognitive domains that tend to fail in a predictable order. And when caregivers are supported with that scaffolding, it's like having a map. Now you have you're oriented to where you are, you're oriented to the destination. And many families that I've worked with have said over the years, Amy, everything happened just like you said it was going to X, Y, and then Z. And we were prepared because we knew from the start how this journey would progress. And that's really transformative because something as scary as dementia that can be different for every person is really overwhelming if you don't have a map.

SPEAKER_00

19:37

It it is very overwhelming uh because you're feeling okay, you know, you know that your family member is is sick, even if they even if like for my mom, if you looked at her, you would not know anything was wrong with her. Right. You know, so you you're coping with that, you know that they're sick, but then you're also coping with that loss, that anticipatory grief of she's she's not my mom, yet she is. And then you also like I had to deal with my dad too, because he didn't know how to cope with it either. You know, he didn't he didn't want it to be true either. It took him a while to get to that point with it. Yeah. And then you just feel so overwhelmed because you think, oh my god, Alzheimer's dementia, what does this mean? With it, and I think as a caregiver, you do you feel guilt, you feel conflict, you you do get burnt out, you know. Absolutely. Because I know sometimes well, we ended up having my mom ended up going to a memory care facility. Uh because the doctors and nurses were like, they told us we weren't gonna be able to care for my mom at home with it. And I do think for my mom, even though I hated that, it was like it was horrible that I had to do that for her. Um, but I know it was the right decision because she actually got she got out of my house twice in one night. Okay. And she was like, I was literally right next to her, and she ran out the door, you know. Um I think if we had brought people in, I think it would have agitated her more if we kept her at home. Because again, she thought my dad was having affairs and he wasn't um with it. Um but you do, you feel this guilt that absolutely you know. So can you talk a little bit about that with the caregivers?

Guilt Grief And Caregiver Relief

SPEAKER_01

21:25

Definitely. Caregivers, I I talk about this heavy caregiver backpack. I run a support group in my town and have um many caregivers who come month after month, and I listen for their pain points, for their points of suffering, right? And there are several common themes to almost every dementia journey from the caregiver's perspective. They do feel guilt, they feel sorrow, they feel loss, they feel frustration, sometimes they feel resentment, they feel anticipatory. Grief, they also feel a very complicated emotion of anticipatory relief. And many caregivers are reluctant to share this, but I want to normalize this for people that if you feel the anticipatory relief that when your loved one passes, your life will be a little bit easier. I always normalize that for caregivers because the caregiving journey on the dementia journey is very, very heavy. And that's part of what I work with families. One of the things that is common and that I hear in your story is that your dad was working from a different understanding from you. And that makes it very challenging. And when I work with families, I invite everyone that interfaces with that loved one with dementia. And we meet, I work with families all across the country. We meet online so that we can all have a shared framework and understanding and experience. And moving in unison in this way from a shared understanding really helps the entire caregiving family journey. And this is a real shift from when I worked in the traditional medical model, which pairs the patient and the clinician primarily in the care, right? We center the patient in our traditional medical model. I realized very quickly I developed the first comprehensive dementia care program for patients in Wyoming. And I was meeting the patient and the family at home and talking about all the patients' failures with the patient sitting right there and trying to educate the caregiver with the patient sitting right there. It was deeply impactful to the patient's dignity and well-being.

SPEAKER_00

23:50

Yes.

SPEAKER_01

23:51

And very quickly, I decided this is not the appropriate approach for the dementia journey. We have to separate the patient and the caregiving support. And so that's what I do in my practice when I work with families. I meet with the patient if they are in Wyoming separately from the pati from the family visits. And that really makes all the difference for the families.

Dignity First And Better Communication

SPEAKER_00

24:15

I would agree with that because they they don't understand what is going on. And sometimes they do get agitated, like, no, that's not true. I'm not doing, you know, I'm fine, or that. And I think like what you just touched upon is how important it is to give them dignity, you know. Absolutely. You know, it to be able to go into their world and give them dignity. Because sometimes I think now back of like, God, that had to be so scary for my mom. Sure. You know, like that she didn't understand what was going on, you know, things that she thought she could do, she couldn't do anymore. You know, something as simple as confusing the TV remote control for the the phone.

SPEAKER_01

24:57

Sure.

SPEAKER_00

24:58

You know, like it has to be so scary. And so to give her, you know, give them dignity with it. And and it's I feel like it is. There's so many different layers because you're trying to understand the patient, but then you have all these levels as a caregiver, you know. Yeah. And I how do you I I know one of the questions I wanted to why do you think that caregivers feel so unprepared for this journey, even when they're very highly capable people?

SPEAKER_01

25:28

Yeah, what a great question. Dementia is not intuitive, it unravels things in the brain that are not visible. And until you have a way of translating behavior back to brain function, you simply don't know what is happening and where your loved one is. On top of that, there are many different aspects of brain cognition and function that make memory and processing unreliable and unpredictable. And so that's another layer of complexity that I help make sense of. And then we have our human brain is so amazing. I mean, actually, I see this in my dog's ability too. She can read the room. She knows when I'm upset or when I'm happy, right? And we humans have developed, we developed this from a young age, from infancy on, this incredible set of communication skills, receptive and expressive communication skills that allow us to read the room and succeed in the social environment. Okay. And this is a very complicating layer of the dementia journey because people with dementia often sound and seem and look like they are still just fine, right? Yes. And that's because we are built with this, we develop these amazing social skills to allow us to succeed in the social realm. And so the social ability, you know, when you talk to your friend on the phone and you're just catching up and you haven't seen them in several weeks, you don't really know if they're telling you the truth. And you don't really hold a friend on the phone to account in the same way that you might with a person who's right in front of you who is telling you something that you think and know to be untrue. Right?

SPEAKER_00

27:24

Yes.

SPEAKER_01

27:24

So phone conversations with friends are a way that caregivers can adapt their understanding to their communications and interactions with their loved one. If you think about how you interface with a friend, you know better than when a friend calls and says, I'm getting divorced, you don't start listing the thousand and one reasons you didn't like their spouse.

SPEAKER_00

27:48

Right.

SPEAKER_01

27:49

You are there to support them in a way that maintains their dignity and well-being and their perception of your respect for them. And so I help with that. And that is the most fundamental and important transformation that caregivers need to make to be able to navigate this journey in a way that doesn't take so much out of them because it's really hard to go through life supporting and loving someone that you think is lying to you all the time.

SPEAKER_00

28:22

Yes.

SPEAKER_01

28:23

That that's that's an impossibility. That's a task that's too hard for a caregiver, and that causes the caregiver to suffer. That's not a comfortable place to be.

SPEAKER_00

28:32

No, and I've seen that with other friends and things like that. And you know, yeah, I I I I would try, but I'd be like, okay, they're just not there. They just and that's okay. I would respect that. But I'd be like, if you just try to enter their world and try to understand they're not doing anything on purpose, it did, it helped, you know, because sometimes I would be able to like I'd go see my, you know, I saw my mom every day and I'd go and I'd talk to her. And sometimes I would laugh and I'd be like, oh, okay. I mean, I I would joke, and sometimes I'd be like, Sometimes listening to two dementia patients talk to each other was highly amusing. And I don't mean that in a bad way, but I was like, no, okay. You know, like my mom believed that where she was at in memory care, she thought she was at her grandma's house. And so that's I was like, okay. And she'd be like, you know, and I was always so grateful that I paid attention to all her family stories. So I could just jump right in there with her, and I I and it and it made things so much simpler. And she also, when she would get upset, she would then you know be like, Don't leave me, don't leave me, help me. And I could calm her down with that. I wanted to touch upon too when we were talking about um people that are highly capable, little things to notice, like usually when person with dementia, it's hard for them to be in a crowd of people, even if they're the family that they know. They get very quiet. And to to be able, what can you can you speak to that and say recognize that and don't punish them?

SPEAKER_01

30:10

But yeah, everyone let me say this a different way. Nobody likes to do things they're no not good at, right?

SPEAKER_00

30:18

Right, right.

SPEAKER_01

30:19

Nobody really signs up for a hobby that they know they have no skills to do, right? Right, right. And so on the dementia journey, things that once were simple for us, like social gatherings, become far more complicated. And it's simply uh a fact that people with dementia at a certain point they can't navigate the complexity in the physical and social world like they could before. And so simplification becomes a very important structural support for people with dementia. And when we align with their capabilities, and sometimes this does mean hard things, like not attending a wedding, yes, not having family holidays in the same way that we did before. Yes, that alignment allows that loved one to still succeed, and that is what honors their dignity and well-being.

SPEAKER_00

31:15

Yeah, my my dad and I we uh this was in like the we were outside with my mom and we had gotten uh my mom used to love the ice cream cake rolls, and so my dad and I had had brought it, I think it was their anniversary, or maybe it was around my birthday or something like that. And so we were outside with her and we thought, oh, this will be good. She loves all this, and she got upset with us. And sure later on, I realized I said to my dad, I oh, we if we're together with her, he and I could not talk to each other. I said, I realized that I could talk to my mom directly, my dad could talk to her directly, but my dad and I could not talk to each other when she was there because she couldn't follow it. So when whenever so a lot of times it was just one-on-one, and anytime like if if her friend or anybody else would come with me, I would tell them that. And then it made for a very pleasant visit with her because I I was like, she's getting upset because she can't follow. Yes, exactly right. You know, and it was something so simple as that, but it was like, okay, let's make this easier for her, you know, and so then a lot of times it was just me or my dad one-on-one, and then it was okay. But it it's all those things, you know, because people are always like, no, we need to do this the same as we always did, but but you can't with dementia.

SPEAKER_01

32:34

Right. The caregiver has to do all of the adaptation, and that is hard because it does mean that you have to alter your world and their world and their experiences and your experiences.

Training Planning Hospice And Transitions

SPEAKER_00

32:48

Yeah, and I think that's probably the hardest thing is the caregiver. It just is. It really is. I want to I want to talk about your um your website. It's betterdementia.com. Yes. And so what are what are some of the services? I know you mentioned it before, but if somebody's interested, what can they uh get from your website?

SPEAKER_01

33:10

Yeah, so I have a free training and a newsletter that um listeners are welcome to sign up for. Families who are really struggling or who want to get ahead of this journey are welcome to reach out to me. I work with families all over the country, and um this allows me to provide the education in my framework, the Better Dementia Journey framework, which is this translation of brain architecture into behavior, and then back into the dementia journey. I teach the communication and support strategies that align with each of these domains of cognitive function that will be failing on the journey. So caregivers are well supported from the start of working with me to understand the entire journey, including the end of the journey, right? The the end, and I'm sure you know this from your mother's experience, the end of the dementia journey is marked by various medical considerations or experiences. Yes. And as a physician assistant, having a background in palliative and hospice care, I help prepare families for all of these medical potentialities on this journey. And that really helps them feel empowered to make difficult medical decisions for their loved one outside of a crisis. That's the best time to be thinking about your values and wishes for a loved one. So I offer that in private consultation with families, but I also have recently recorded my educational framework as a self-paced course that caregivers are welcome to sign up for. And that is purposely built to fit into busy caregiving schedules. No video lesson is longer than 20 minutes. Okay. And it teaches the entire framework, all the stages, the psychiatric symptoms, the medical realities, hospice, how importantly, how to get started with in-home care and how to make a transition to a care facility successfully. Because this is a very important transition point for families. And if you don't do it in a way that aligns with brain function and a person's need to feel confident, capable, and in control, you can very quickly end up the bad guy in your loved one's mind and experience ongoing accusations and you know other hard conversations. So I teach how to do that effectively.

SPEAKER_00

35:42

And I wish I would have had that because um, well, when my mom got diagnosed during COVID. And so we, you know, I I did the research on the memory care, and she we, you know, she went into memory care during COVID. Um in that first night, I can't tell you how many times she called me and she just was like, How could you do this to me? And and all of this, it oh my it broke my heart. They ended up taking the phone out of her room for a little while. But on the flip side, because it was COVID, we couldn't see physically see her for like a good, it actually was a couple months. We could talk to her then on the phone and we could do the window and things like that. So in some ways it might have helped her transition with it. Um and then when we finally got to see her, it was outside visits. And when you were talking about the dogs, I I ended up taking care of her dog, and she was so happy that Annie, the dog, remembered her. Yeah. And that was the only that was the only time she remembered that Annie was her dog. But speaking with pets and stuff, Annie, this little terrier, she was so good with my mom because I would bring her periodically to visit her. Yeah, and she just she was so calm because normally Annie wasn't always calm, but she was so good and so calm with her. So, like that's something too. Bring pets for them. And the other thing that always amazed me, my mom couldn't remember five minutes what she did before, but she could remember all her old songs that she loved. Absolutely, you know, so music is so important, you know, to play because like she she knew the words to my girl. She started singing along, you know. Yes, so those types of things are so important. And the one thing that I did appreciate with my mom in memory care is it was her room, it was all her things.

SPEAKER_01

37:32

Oh, that's great.

SPEAKER_00

37:34

Yeah, yeah, with it. Because that is that's very difficult to navigate as well.

SPEAKER_01

37:38

Yeah, I can tell that you were an incredible caregiver for your mom. You really knew her, you really took the time to um make her world appropriate for her experiences in life, and you got to know her in a way that really supported what she needed on her journey. And that is amazing. Your mom was so fortunate to have you looking out for her in the way that you were.

SPEAKER_00

38:04

Well, that's I I appreciate that. I appreciate that. That I feel like I learned that from her because she was a caregiver, you know, and I know no, no, that she would have done that uh for me. But I just I in the back of my mind, I was always like, Well, I can't fix her, there's no cure, but at least I could give her some peace because that's all she wanted.

SPEAKER_01

38:24

And and I absolutely and I think that the people as when you're caregiving with dementia, if you could kind of think about that like you can't there, you know the way I say it is that the dementia journey will rob your loved one of their skills and abilities, but it will never rob them of their humanity. And the reason that I chose the word better dementia for my business and my book that's coming out next year, and my course and everything that I believe about dementia is that when we understand the what, when, and why, we can align and we can master the how of caregiving in a way that supports our loved ones' well-being and dignity and also supports our own as caregivers. This journey does not have to be all doom and gloom. And if we learn how to navigate it in a way, we all can have a better dementia journey.

Final Takeaways And Goodbye

SPEAKER_00

39:18

I would agree with that 100%. Thank you so much for joining us, Amy. Uh, so everyone can check out your your book next year, Better Dementia, and your website, betterdementia.com. I really, this was a very, very interesting uh conversation. I hope I hope the audience got a lot from this because there's so much more. So much more to talk about with dementia with that.

SPEAKER_01

39:39

Lisa, thank you so much for having me on. I appreciate the warm conversation.

SPEAKER_00

39:43

Oh, thank you so much. So I hope everybody enjoyed this. And so hopefully you enjoyed your cup of tea, your cup of coffee, or if you're having that really bad day, your glass of wine, and you will join us for another edition of Caddy's Placeu.

Welcome And Guest Introduction

SPEAKER_02

0:08

Welcome to Patty's Place, a place where we will talk about grief, dementia, and caregiving. I'm your host, Lisa. I dedicate this podcast to my mom. It's in honor of her. She passed away about two years ago from dementia for that. So hopefully you will grab your cup of tea, your cup of coffee if you're having a really bad day, glass of wine, and we will get started. So today I'm very excited. Our guest is Marie Alesi. She's a best-selling author, TED Talk, and uh keynote speaker. And you're also the mother of two boys, which is very important as well, too, for that. And you like to have shiny examples of choosing love over fear and sadness. Am I good with that?

SPEAKER_00

0:49

Absolutely. Thank you.

Sudden Loss And A Shocking Week

SPEAKER_02

0:51

So um you could tell why don't you tell us a little bit about yourself? Uh uh your husband passed away suddenly. Is that correct?

SPEAKER_00

0:58

Yeah, absolutely. Uh that was in 2018. Rob went on a business trip and never made it home. He passed away from a brain aneurysm when the boys were 10 and 8. So that was quite a shock to our systems.

SPEAKER_02

1:12

Yes, that that's always it's always hard with that. So, how how did you find empowerment in grief?

Meltdown To Empowerment In Grief

SPEAKER_00

1:21

Oh. Wow, it's such a loaded question, and it was quite a loaded moment for me as well, because that was the least I expected to find in grief, to be honest. And I want to share a little story that preceded that so the audience understands how that came about, because obviously that answer is quite surprising. And I remember the week where we had Rob's funeral, and it was a midweek funeral on a Wednesday, and it was unexpectedly an unbelievably beautiful day, and as you can imagine, also a very intense day. But my entire focus was on giving Rob the most beautiful celebration of his life that he could have expected, you know. So there were about 500 people in a room, 300 of us went um on and and you know, celebrated together. And it really was my utmost emphasis to celebrate his life, make that about his beautiful personality, his, you know, he he was so bright. Like people just when he entered the room, people just loved him. And I wanted to reflect that in his celebration. So, in the same week, on the Sunday, I had to walk down the aisle with my younger son for his first Holy Communion. And I would have never expected that that was harder than the actual funeral because Rob was supposed to be there, and we live in a small country town, so all eyes were an us, and I really struggled to keep my tears back. I was so trying to stay brave, and I think they wanted to protect us by putting us on the very last row in church, so not everybody would stare at us, but what nobody understood was they gave us the longest walk through the entire church, and it it was torture for me. Every step of the way was really hard because I wanted to be happy for Jid. I wanted to celebrate his stay, I wanted to celebrate him, and yet there was so much heaviness in our hearts that day because you know Rob's absence was so present, it was so apparent. So, fast forward later that day when finally everything was done and dusted. And I'm talking, you know, it was the biggest week of our lives with the funeral and the holy communion and all these different layers of emotions. And that night I had a complete meltdown. Um, I started, you know, calling up to the boys, they were bickering, or brushing their teeth, and then all of a sudden, this sentence left my uh body, I want to say, and it was boys, I just need peace and quiet. I remember how I sort of yelled it up to them because I was so on edge. And I realized that was the moment because I've been holding everything together, that was the moment when I just collapsed. And by me saying that sentence out loud, it was like a valve had opened that couldn't be closed anymore. And I started yelling that sentence over and over, and I could see how my body, I just needed peace and quiet, and it got louder and louder until I literally it turned into primal screaming, and I found myself on the kitchen floor, whacking the kitchen cupboards and screaming and screaming and screaming. And I remember that being an out-of-body experience. It was like I could see myself on the kitchen floor. I had no idea how I even got to the floor, and I watched myself screaming and whacking the cupboard doors, and and all of a sudden I remember the boys upstairs, and it just snapped me back into my body. And I'm like, I need to get my together because I need to be present for the boys. They've just lost their dad, they can't lose me as well because I'm I'm losing it, you know. And that led me to seeking the help of a positive psychologist. I sat and on the bed with the boys that night. We had a really raw and deep conversation about emotions and how to process them and how unhealthy that felt for me, and how scared it made me and them, and what to do about it. So I went to the positive psychologist. I went to a couple of sessions with her, and we got to the point where she said, Um, you know, what was going on in my life. And I told her how heavy those expectations are from other people, from onlookers that are expecting me to fall apart. They were waiting for that moment. They were like, you know, she's too happy, she's too positive, she's to this, she's, you know, celebrating her husband's life, and she's so happy where she should be crying. And there are so many opinions of people who have got no idea what we actually went through. And I said, that weighs really heavy on me. And she said to me that moment, she said, So, what does grief mean to you, Marie? And that's where that word came up. I said, empowerment, and that really surprised me, but it also brought me back, and this is why I took you through this whole moment, to that falling apart moment. There was such primal power in that moment that I felt. And I got to the point where I realized I can let that power destroy me, or I can use it and tap into it to build myself up and to stand strong and hold that space for the boys and be the parent that they need me to be. And yeah, that's that's where I found empowerment in grief.

SPEAKER_02

6:34

And I I love that story because I think it's really true. People are always like, oh, well, it's grief, you should be crying. No, you you can feel anything in grief with it.

SPEAKER_00

6:44

And everything.

Celebration Of Life Over Cookie Cutter

SPEAKER_02

6:45

Yeah, and um it made me think when you were talking about your husband's celebration of life. My mom was always so funny, you know. For years before she was ever sick, she used to tell me, you know, that when she died, she I was supposed to uh she was gonna leave a list of invit invitation only to her wake. And I was like, Well, mom, what am I supposed to do if somebody shows up that isn't on the list? And she's like, Well, I'll be dead. That's your problem. I was like, Thanks, mom, you know. I love it. And then she was always like, and then and before she decided she was gonna be cremated, she would be like, and don't you dare have that casket open. I don't want anyone looking at me either. Don't you dare do that to me, you know. So later on, she decided she wanted to be cremated because she was like, Don't be spending all that money. And she's like, do whatever you want with the ashes, you know, or that. So when it came down to it, um my mom actually passed 10 days before her birthday. And so we ended up having her her service on her birthday. And so we ended up making it a celebration. It's beautiful, though. Yeah, a celebration of her life because she used to say to me, you know, you don't have to have it anywhere, you know, maybe have it nice, invite whoever you want, tell stories about me. I don't care. Except she left her list of music she wanted played. And I really, yeah, that was important. Um, but we had a cake for her and everything, and and we I we brought things that were her because that's what I wanted it to be. And and people said to me it was it was her, you know, and and I think that's what's so important because you know you go to a lot of different wakes or funerals, and sometimes you feel like they're almost cookie cutter. You know, you say these prayers and that, and I think it's important that you celebrate their life, you know, who they were, tell the story.

SPEAKER_00

8:36

The cookie cutter, if you don't mind me saying this quickly, because I feel to me, you just found the perfect way to describe the difference between a funeral and a celebration of life. And the funerals are very cookie-cutter, usually, you know, that's why I don't like to call them funerals. Yes. It sometimes helps because we have that, you know, common vocabulary that people know instantly. But when I say celebration of life, that's really what we did. And it seems like that's exactly what you did for your mom. I love it.

SPEAKER_02

9:03

Yeah, and so I told, you know, family and friends, I'm like, come on up and say whatever stories. And um it was her great nieces and nephews that came up because she used to she would babysit them as they were, you know, they were now they're in their early 20s and stuff, and they were telling they were telling stories, and and the one he was like, Can I tell this story? I go, You can tell any story you want about her. And so they did, you know, and they laughed and and everything, and people were laughing because I was like, Yep, that was her, you know.

Helping Families Create Lightness

SPEAKER_00

9:30

Um that's exactly where it should be. I love it.

SPEAKER_02

9:33

And I I wanted to talk about the celebration of life because on your website, you actually help families with that. How do you do that?

SPEAKER_00

9:40

Yeah. Oh my God, how do I do it? It is because I love focusing on their happy stories, on the joy, on the love that they brought into a family. So when I come and meet with families, most of them, if they don't know much about me or what I do, uh, they sort of expect that, you know, what prayer and what this and what that. And I always come in and say, tell me the beautiful things about your person, you know. I want to get to know them. I want to know about what made you laugh, what what was the joy, what was the love about? Have you got happy moments, happy memories? And what are those memories that you would like to share? And they always look at me and say, Oh, okay. Uh, and and then you see that shift happening in them, and it's so beautiful because all of a sudden there's this lightness that comes in. And my whole tagline of my business is bringing lightness into grief. That's what I'm about in a nutshell. It's everything I do in my business is all about bringing more lightness in and educating people on the language. I think that's a big thing as well. So there is an expectation, as you said, funeral, cookie cutter, which prayer, what song, what when speeches. And I always say, what can we do with the speeches? What can I bring with our speech, with my speech that I hold for the family? That brings something unique and something beautiful into this celebration because I'm here to celebrate your person. If they want cookie cutter approach, I'm not the right person for that. I don't do the standard and heavy and sad, I do celebration and joy and love and happiness, and that's a huge difference. It makes such a difference, and people talk about that for years to come.

The Happiness Filter After Loss

SPEAKER_02

11:22

Yeah, I do. I I I've always felt I was glad that we did that with my mom that way. And and it was basically what she had said, you know, and she kind of left it up there, but that's you know, who she was and stuff. But you got to hear those different stories because I think when you do the celebration of life, especially if they've been sick, or even if it's sudden, you're not talking about that illness, you're talking about the person and what they meant to you for all of that. And I think that that's what's really, really important. So, how did you find some happiness amongst all your grief? That I mean, that's hard to find, you know.

SPEAKER_00

11:58

No, I don't think it is. No? Okay. I honestly don't think it is. So I want to step back again to paint that picture. I'm gonna make this story super quick. Less than three years prior to Rob's passing, Rob and I had the what-if conversation, and it was such an intense moment because Rob called me on the way back from work and he said, Hey babe, I'm gonna be two hours late. There was an accident on Heathcote Road. Heathcote Road is like a one, like 25-kilometer road or something through the national park. And when there's an accident, it's a huge detour. There's nowhere where you can go. You have to literally go back and doing that in peak hour traffic, it adds about two hours plus to your journey. So instead of his usual half an hour I'm home, he came home like two and a half hours late or something. And we learned that at this accident it was a front-on collision with a firefighter off duty, he was coming home and a truck, and he died on the scene. It was really tragic for us to learn about that because his daughter was only 16 months old, you know. So for a lot of people, it was such an inconvenience. Oh, my husband's coming late for work, and the boys are waiting to see dad and you know, dinner and bathtime and all that stuff. But for one family, it meant that the dad never came home again, you know, and it hit us so deeply. I remember that conversation because our boys were so little, and I remember sitting on our bed that night, and Rob and I were crying and and talking and laughing, and we had all sorts of emotions that night. And we talk about the what would you do if you were to receive that phone call, you know? And the outcome of that one and a half, two hour conversation was I would want you to create the happiest life possible for you and the boys, because that's what love is. You know, when you love someone, you want them to be happy and not suck in grief. I don't expect anyone to not grieve. It was not my aim to not grieve Rob. I certainly did. But when I received that unexpected phone call that I always thought would never happen to us, that was the first thing that popped in my mind. And I heard it in Rob's voice create the happiest life possible for you and the boys. I could hear it in my mind as I'm sharing those unimaginable truths with my boys. You know, it was such an intense moment, and that came up and it became my lighthouse in my darkest hour. That was my, I have no idea how, but this is what I'm going to do. I'm taking you to happiness. I want to create happy memories, happy moments. And every decision I had to make, tiny or huge, was based on is that going to bring us happiness? It became my absolute and only filter in life. And once you decide, it actually becomes easier and easier and easier because I never thought of anything in my entire agreement and never thought about anything of this is hard. I just thought about what I wanted to do. Because if I got sidetracked, then this is hard. It would have taken me down. I never allowed that. People always say that to me, that would have been hard, or so parenting would have been hard. And I was like, it puzzles me because I'm like, oh, I never thought about that. Because I didn't have time to think about whether it's hard or not. I just did it, you know. That's what I had to do. I was so focused on creating a beautiful life for them that I didn't think of anything else.

SPEAKER_02

15:24

I can relate to that in the sense that people say to me, Well, they had to be hard with your mom. She didn't know who she, you know, didn't she didn't know who I was. And and and dementia is and stuff, but to your point, it wasn't something I thought about. It was just she's my mom and and she would have taken care of me. So I'm gonna yeah, it's like uh yeah, it was, but I I didn't have time to dwell on it because I needed to make you know, make sure she was safe and it's almost like they're missing the point, you know?

SPEAKER_00

15:55

Yeah, because there's so much love there, and that's that's your focus. You're not like, oh, this is hard or not.

Coping Tools For A Family Of Three

SPEAKER_02

16:01

Yeah, it's love. Yeah, and and I'm always always like, Well, if the roles were reversed, my mom, my mom did do that for many people, so it was like I you know, I had to do that. But how did you, as a family of three, how did you cope in the early days? Because it had to be hard. Your boys were young. As I just said, it had to be hard.

SPEAKER_00

16:21

No, no, no, it's fine. Um, how do we cope? It I think I'm gonna start with what helped me the most in that whole situation was uh the positive psychologist was really, really important. So I saw her for about four and a half months, maybe after Mob died. And in that conversation about empowerment and grief, I also said to her, I think I need to write a book about this. And she said, Yeah, I think you should. And I went home and did that. So I think the writing really helped me because it was very cathartic. I wanted to write down the story for when the boys are older that they could read it. I wanted to write it down while it was fresh. I wanted to write it down because I thought people might get a different idea how to handle grief rather than the cookie cutter that brings a lot of heaviness and sadness. Um, and what I didn't expect was that the book ranked in the top 100 bestseller list of Amazon Australia. So I knew there and then I had something the world needed. I had happiness and healing where you needed the most but expected the least. As for my boys, all I learned in that because I had no idea how to do this. I've never been a sole parent before, I've never lost a husband before. It was all completely new to me. All I had was love. And all I had was that focus on I want a happy life for them. And Flynn and Jed were both so, so different in their grief. It was never the same. Sometimes they swapped over, but one wanted to talk about it all the time, the other one never wanted to talk about it. One cried about it every night, the other one never wanted to cry, and really tried his best to keep it all together. So I think that was the hardest part for me, speaking about Heart, that they were so different in their approach. And I never knew should I mention Rob, should I not? But I just didn't want to think that through. I just trusted my gut instinct. I just talked about him when it felt right, and I never forced it. I have to, you know, mention dad every single day. I never try to hold back as in don't trigger them because I think there's no worse trigger than making anybody who's close to us or especially his kids feel that that is forgotten or it's not talked about anymore. And yes, it might trigger, and yes, there might be tears, but it can also trigger joy and happy memories. And I I wanted all of that. I thought there is no hiding emotions, you know, they all need to come out. I I just wanted to create a space for our emotions to come out. And then the biggest part for us on the journey, I think that was the most important part for all three of us on our healing journey, and we still talk about it today. I took them traveling around the world. Oh I just took off. I needed to get away from older onlookers, from older expectations. Um, I took them out of school early. The big summer break was coming, and I'm like, we're going, we're just going. And I sat with the boys and I said, Tell me anywhere in the world, is there anything you want to do, anything you want to see, anywhere in the world, it doesn't matter. And my older son, I should laugh about this. It's such a funny memory, actually. Uh, he said, I want to eat snails in in Paris. And I'm like, hmm, okay. So okay. It became one of the grossest and most bonding moments we ever had. Sharing a third of one escal between the three of us, and it was such a mind of a matter thing. Oh my god, I'll never forget this. Uh very French waiter in this little cafe near the Eiffel Tower, and we ordered uh six escal and sent five and two-thirds of them back. But yeah, it was it was incredible. I think traveling really gave us freedom and likeness and space and lots of new happy memories, and it was so needed for all of us to give our soul a break and not be in that circle of you know, where we could feel Rob's presence. Um I should say, sorry, his absence, obviously, you know, where he should have been present. We felt his absence so intensely when we were in the house. So that it was really quite important for us to get out, open, open our hearts, our minds to the entire world and allow some healing to happen. That was beautiful.

Hidden Gifts In Adversity

SPEAKER_02

20:39

Uh I would agree with that. I I had the opportunity to go to Ireland that my mom passed in January, and um actually my dad came with me. It was a group uh at at work. We it was a tour, and we were there for 10 days. Well, that was always my dream trip was to go to Ireland and and that, and it really did. Like those 10 days were just I I would go back in a heartbeat. Like it really did. I mean, I still felt my mom there and stuff, but it was just you're in that different environment, you know, you're she traveled first class with you, yeah. You know, like and you you see different things. Yeah, I felt it, yeah. My soul felt like so refreshed, and it was such a wonderful experience with that because you know, I I think sometimes people with with children they don't know what to do. And and I just me personally, I think that just to talk with them and say, if you want to talk about that person, talk about them. If you're not up, you know, like they're having the same feelings as adults, only they may not know how to process it or what to say. Yeah, you know, and to be able to have that safe space for them, I think helps uh so much when it comes to their processing their grief with it for that. So you talk about that there's hidden gifts in adversity. What are those hidden gifts?

SPEAKER_00

21:56

Yes. Oh I think it's one of the most underrated and overlooked things in the grief journey that there are always like every adversity comes with hidden gifts. It just depends on whether we open ourselves up to seeing them and even further receiving them, you know. And I I need to take you back to my dad's passing to answer that question because my dad died when I was 20. And back then I had no tools, no idea how to handle it, how to process the grief. I felt I was completely alone in this world with grief. And of course, my brain knew I wasn't the only one who lost a parent, but my heart felt so alone in this journey because none of it happened to none of my friends. So nobody knew how to deal with it, how to handle it. And it took me a good year to get out of my funk. I was in such a hole in with all of that, not knowing where to go. It was really like one of those pull the rug under my feet and who am I now? You know, it was I was 20, so you're officially an adult, but you still really need your parents around. And I was so close to my dad. And when I met Rob, my husband, I thought one of the most amazing hidden gifts in the adversity of losing my dad was that it taught me to be fully and wholeheartedly present as often and as much as I can. We're all humans. I don't do this 24-7 all the time, but certainly a lot more than I ever did before. It gave me such a focus on being present with the people I love, with the people around me, which resulted in me always telling my friends and strangers when I when I loved something about them. I I still to the day, I tell strangers on the street, it's like, oh, I really love your shoes. Or, you know, I'm I'm walking the Seacliffe Bridge, which is such an iconic bridge, like uh 50 minutes south from here, and I love going for walks there. And I remember seeing a couple and they were so in tune, they were so in love. And and I just walk past like that, you know, it's just like giving them a bit of a love heart, and it's just those little moments, those tiny connections, those um being with Rob, like every single day I would tell him how much I loved him, and it wasn't based on fear that one day I might lose him because I never thought that that would happen. Despite having lost my dad, I never thought that would happen. But it gave me this being present and telling people how much I love them all the time. And again, not from a space of fear, but from a space of love and wanting to be present and wanting that connection. And that was a gift I learned from my dad's passing. Don't miss a moment, be present because life is so freaking precious. And what other and really brutal way is there to learn it than when you lose somebody so close to you? So that's just one of them. But there is just multiple, you know. Even sometimes when I when I thought of the journey, you know, like I would have not been in a financial position to travel around the world with the boys, yet I had a really unbelievable friend that came out of nowhere that I hadn't had close contact for many years, and who just transferred the all the money plus more and said, I want you to have this experience. Uh, that friend always wanted to stay anonymous, and I absolutely honored that, but it was unbelievable. And to receive the how much I had changed in that person's life that I was never aware of, she said, You've got no idea what you did for me. I want to, this is all I can do right now. I know it's not going to bring him back, but I want you to have this experience, and it was such a gift, it was such a huge gift to be able to travel. I would have not been able to do that without Rob's passing, which is really tragic, you know. I it doesn't bring it into perspective, but do you know what I mean? There's all these things that come out. People come out of the woodworks that you never thought that would be like really close friends and other close friends that you thought would be there for you all all of a sudden disappear. So it really changes the dynamic, it changes your network, it changes your inner circle. And in that you can also discover a lot of hidden gifts, you know.

Services And Grief Literacy For Schools

SPEAKER_02

26:17

That's very true. Like, yeah, yeah. I sometimes I am surprised by who was really there, who wasn't, or you know, who just said things that were like, wow, that really helped me, or yeah, it's just kind of amazing what what it brings out with that uh with that. But I want to make sure we talk about your website. It's Marie Alessie.com, correct? Yes. Yes, correct. So what um you have a lot of different services and things like that. So what can people, if they go to your website, what can they what services in that do they have?

SPEAKER_00

26:53

So I think the bigger categories is I do ceremonies. I love doing celebrations of life. That's something that is really, really close to my heart and it's just so beautiful. We talked about that before. Uh, then of course I offer one-on-one coaching. I used to run group classes, I don't do them at the moment, but um, sneak peek, they might be coming back in a different format, but it's too early to share publicly yet. Just a sneak peek. But yeah, so I offer grief coaching, I offer family bereavement sessions, which I think is just so beautiful, especially when kids are younger and don't know how to really truly express that yet. There is actually um in the family uh bereavement sessions, um, we draw images of four different stages where I take the family through, and it sort of brings them on a similar level rather than the parents talk and the kids don't have words for it. So it brings them together, it brings them into a shared experience, how you can process this. And I I did one myself after um Rob passed away, and it was one of the most emotional and really beautiful things that the boys and I did together, and they said the same thing, it was hugely emotional, but they were so glad we did it. And then I offer uh family consolation, which is really beautiful in terms of looking at the structure and the family dynamic, what changes when that person passes, and it's just incredible because you are actually led into the outside perspective about your own situation, about your own family, seeing yourself in the picture as well, which is incredible. Um, and then I offer speaking and workshops as well. I've just brought out a grief literacy workshop for the schools, which I find so important because most schools are not equipped to handle grief in a classroom, which is shocking to me because in Australia, our statistics are that one in 20 children loses um a uh a parent before the age of 18.

SPEAKER_01

28:49

Oh.

SPEAKER_00

28:50

And that is only losing a parent to death when you bring in divorce or uh other situations, or losing a grandparent or a sibling, that's not even included in the statistics. Oh, yeah. And that statistic alone is 5% of our children who lose a parent to death before the age of 18. And then when you add all the other deaths or losses or grief into that mix, the statistics just go up and up. And it is not taught when you become a teacher, it is not taught in the curriculum of teaching teachers to teach our children. And I'm like, how can this not be part of their training? They need to have so I put the brief literacy workshop together for uh teachers and school staff to give them wording, to give them language, to give them tools, how to hold space and how to integrate that in a classroom, because the biggest thing is that this child feels completely excluded from the rest. There's this, you know, loneliness that they feel, and most people are not aware of it. They call it resilient, but truly they feel lonely, not resilient, you know.

SPEAKER_02

29:56

It definitely, yeah, there is that loneliness. Even when you are trying, you know, going through everything and and and feeling your feelings and and processing it, there is always that that loneliness because that person's just not there and they're never going to be there physically again. So there is to be able and sometimes just to acknowledge that, yeah, I do feel lonely. I really miss that person today, you know.

SPEAKER_00

30:20

Yeah, especially in and also because you're the only one in the classroom, you know. All the others go home to mom and dad, and you go home to mom. You know, that there's that loneliness as well. That you feel you're the only one, you're not included in a group anymore now. You're now different. That is the loneliness that is so hard for a child to deal with. Oh plus you know what you just said.

SPEAKER_02

30:42

Oh, definitely. Like even, you know, something as simple as Mother's Day or Father's Day, you know, those are the different holidays. Uh and it and depending on how old the child is, they may not be able to process. They don't understand what they're feeling. So to have somebody like talk it through them and let them know that it's okay can help them immensely with that. And you do this in person or do you do virtual as well?

SPEAKER_00

31:09

Uh obviously the celebrations of life I do in person, but uh everything I offer can be done virtually or in person. I do a lot of Zoom on on Zoom these days. So uh all of my one-on-one clients I see on uh Zoom and uh the the workshops, the grief literacy workshop can also be done on Zoom. I much prefer teaching it in the classroom, like with the teachers, because it's just so different the connection that you have when you're in a room with those people. But it never stops me from saying yes if people want it further away, then I can travel in that moment. So yeah, it can be delivered either way.

SPEAKER_02

31:46

And you also uh your books are available too on your website as well, because you have several books. Yes, for that.

SPEAKER_00

31:53

I have. I authored four books and I co-authored another four. So my books are the the first one that I already shared about, Loving Love After Loss. It was our story, you know, how I met Rob, our love story, how he died, and how I dealt with it. Then the second book was a bit of a sequence to that. It uh shared what happened after that when the book ranked in the top 100 best sellers of Amazon Australia, and how I created a movement out of that, in which I took about 5,000 people on their healing journey, which was incredible. And it also has my seven steps from grief to relief in it, which are the steps that I took after Rob died. Then I've got a prompted journal, which is Sparks of Joy. It's got like a one-liner, just two, three lines basically every single day to spark joy, and then it's got enough space to journal. And excuse me, the latest book that came out uh last year in October is a book that I surprisingly co-authored with my sons. So I was almost uh in the final stages of my book, and it was supposed to have four parts one to the griever, one to the support person, uh, one with references and one with helplines. And as I was in the finishing stages, I got this download. The boys need to be in this book. And I'm like, oh, interesting. Okay. So I addressed the boys and I said, Hey, how would you feel to co-author a chapter in this book? And both of them I asked them separately because I didn't want to, you know. Um, and both of them gave me a resounding yes. So I created a sort of QA style, how they felt uh what happened after dad passed away, and how they felt supported, you know, by their teachers, by their peers, by uh school staff, in the community, in their immediate family, an extended family with with friends outside of school. Uh so I went through all of that, and both of them gave me rather different answers, you know, and that was so much that came out, and I just I just um integrated that into the book between the griever and the support person, and it was unfiltered. I did it, it sparked a lot of conversations because there was so much coming up that I was absolutely not prepared for. That I was wow, it was really emotional, and we had a lot of discussions about it. And I said, I'm happy to publish it as is. I just want you to understand once the book is out, this person could potentially read it, that person could potentially read it. You know, I wanted to them to be aware of the impact that could have uh on extended family or the teacher that, you know, was not as supportive as he could have been, you know, so like things like that. And my younger son that was the one I had this discussion with, was like, Yep, I'm fine with that. Okay, publish.

Breathwork Connection And Closing

SPEAKER_02

34:47

Oh yeah. Well, that yeah, that that's good that he was okay with that. So what what do you think? What do you think your husband would say about all the work that you've done after this?

SPEAKER_00

34:58

Oh, he'd be so freaking proud of me. I know that I can feel him around so often, and I hear that a lot from him. You know, I I have a way of um tapping into my husband at any given stage that I want now. I've done a lot of breath work in my healing journey, and in those breath work moments, I had a lot of moments where I really like just got into this next level of consciousness basically. It's it's been credible. And I spent a lot of time sitting with Rob, connecting with him, and I feel I can just tap into him at any stage now. And I so often hear, I'm so freaking proud of you, babe. You know, I can see his big smile. And um, yeah, I had a lot of uh psychics that I never seek out. I don't go to psychics for readings or anything, but sometimes they just come into my podcast, and sometimes I know before, sometimes I'm not aware of it, and I constantly get that, you know. And I'm always like, Yeah, it's very generic. Of course he's proud of me, but yeah, I don't want to question any of them, but but I get I get it all the time. That's the one thing that keeps recurring. Your husband must be so proud of you, or I can see he's so proud of you. And I'm I'm actually sure he would be because that's what he wanted me to do, right? I completely honored that wish.

SPEAKER_02

36:11

This has been so enlightening. Thank you so much for joining us today. And I will make sure your your website is on there. So I hope people come to your website and look at your books and everything. And I love your accent. Someday I'm gonna get to Australia. That's on my list.

SPEAKER_00

36:28

I love it. Thank you so much for having me, Lisa. I really, really appreciate you holding space for my story. Thank you.

Subscribe And Final Takeaway

SPEAKER_02

36:33

Well, I it was very interesting. So I hope our readers, our readers, our listeners will enjoy it. So uh just to tell everybody, make sure you subscribe to the YouTube channel. It's at Patty's Place-116. They can subscribe to that. And hopefully you don't feel so alone anymore and you find some light through the grief, as we were talking about today. So hopefully you had it enjoyed your cup of tea, your cup of coffee, or if you had a really bad day, your glass of wine, and join us for another edition of Patty's Place.