Category: Podcasts

Welcome And Why This Show

SPEAKER_01

0:10

Welcome to Patty's Place, a place where we will talk about grief, dementia, and caregiving. I named this podcast Patty in honor of my mom who passed away from dementia about two years ago. I'm your host, Lisa. So I wanted to create a place where people know that they are not alone when they are going through all of these difficult times. So grab your cup of tea, your cup of coffee, or if you're having a really bad day, a glass of wine, and let's get going to talking about our guest today. Our guest today is Victoria Volk. She is a certified grief specialist. Uh, you're also an author, uh, your creator and podcast host of Grieving Voices, you're uh Reiki Heatmaster and a certified biofield tuning practitioner and a UMAP certification coach and end-of-life doula. So welcome.

SPEAKER_00

0:56

Thank you for having me.

What An End Of Life Doula Is

SPEAKER_01

0:58

Yes, I'm very excited. There are so many things to talk about with you. So let's start with what is an end-of-life doula?

SPEAKER_00

1:07

An end-of-life doula is the person that bridges the gap between the caregiver and the care team and the individual who is receiving hospice care or you know, the patient.

SPEAKER_01

1:23

So you come in um towards the end, or do you how does that work?

SPEAKER_00

1:29

Well, so in an instance like where someone is in hospice, I'll use that as the example. Um oftentimes people enter hospice at the very end. Um but what people don't understand or realize maybe is that you can actually be on hospice even a year before you get close to passing.

SPEAKER_01

1:50

Yeah, I didn't realize that either because when my mom had hospice and uh at the time my dad and I weren't sure if she would be ready for it, but they told us that they take they can be accepted into six months up to two years or longer for hospice.

SPEAKER_00

2:06

Yes. It's it I think the misinformation is that you have to be like close to actively dying before you are in hospice, and that's that's not the case.

SPEAKER_01

2:15

No, it's not. And they are just I can't I cannot talk highly more highly enough for hospice. They they are just wonderful for everything that they do for it. So then in end of life, Adula will kind of come in and help the actual patient with it.

SPEAKER_00

2:31

They're yeah, they are the advocate for the patient first and foremost. Okay. But then also can bridge the gap between, you know, the family and their questions and things like that when the care team is unavailable or or to explain things maybe in a different way. Um but more so than anything, it's to bring understanding to what is happening, to be an advocate for the patient as far as their wishes. Um really my training actually, so my my father actually passed away of cancer when I was a child, and he passed away in a nursing home.

SPEAKER_02

3:09

Okay.

SPEAKER_00

3:09

Uh, there wasn't, this was, you know, late 80s, there wasn't hospice wasn't what it is today, and resources, very rural community as well. Um, and so that what the training in in uh enlightened me in is that um it is possible to have like a dying wish, right? It's like your dying wishes. Like, do you do you want to be bathed when you die? Do you want your family to bathe you? Do you want um soft lighting? Do you want what kind of music do you want to be playing? Um who do you not want to see? Um, so an end-of-life doula can also be a gatekeeper to visitors. Um, you know, being because it would be difficult, right, for family to say, I'm sorry, but they do not wish to see you, right? It's a little bit easier for an end-of-life doula to be the advocate for the patient.

SPEAKER_01

4:11

And then you create even more drama hit with that. Right.

SPEAKER_00

4:15

So yeah, like I said, they're like the buffer and the the the bridge and kind of all of those things.

A Definition Of Grief That Fits

SPEAKER_01

4:22

Um, I like how you said about the music because um I I ended up being with my mom the well, I was with my mom all the time, but that last week uh I spent the night with her. She was in memory care. And pretty much almost every night I would play her favorite music. You know, just she had picked out the music she wanted for her service. I would play that, but then I also just played all the different music I knew she loved through the years because I thought, well, I know she could still hear me and I would talk to her, but I thought she loved her music. So I thought that would give her peace too with it for that. Um, I think that's really cool. Actually, uh, I when you when you were describing the end of life doula, I just remembered, I don't know if you ever watched the show The Pit on HBO. I have not. I haven't yet. They actually in the season two, a couple episodes ago, they had um uh they portrayed it end of life doula with a woman who had had cancer. Yeah, so it was uh with that. So I I think that is important to help, you know, with the patient and the family at the time. What would you say is the definition of grief that most people likely have never heard before?

SPEAKER_00

5:30

Grief is the loss of hopes, dreams, and expectations. It is anything that you wish would be or could be different, better, or more. I like that definition because yeah, it's it's a lot of things. It is a lot more than just about death.

SPEAKER_01

5:46

Yeah, it's all those secondary losses and things like being able to pick up the phone and call that person or go shopping or or anything, watch TV with them, with that.

SPEAKER_00

5:56

Or a loss of health or a dream or finances. Yeah. Um moving.

SPEAKER_01

6:04

Yeah.

SPEAKER_00

6:05

Different job, losing your job.

Grief Recovery And Emotional Completion

SPEAKER_01

6:08

Yeah, there's a lot to it with that. So what would you say is grief recovery?

SPEAKER_00

6:15

Grief recovery is a method, an evidence-based method to recover from the emotional pain of loss of any kind. Okay. And so I'm a advanced certified grief recovery specialist. And it's kind of a mouthful. But the advanced part means is that I can work with individuals online. Um, but with this method, we walk through a process that um takes people through their most difficult relationships. Um they don't have to be dead, right? Like that's grief, no one has to die for us to grieve. So it can and often my clients and even myself, I've worked through relationships with people living in my life. Because it's difficult to have the emotional honesty sometimes with people who I mean, have you ever tried to have a deep emotional be to be emotionally honest with someone who's unhealed in their own heart? Yes, yes, it's very difficult. It is very difficult, yes. Yeah, you probably get a lot of defensiveness or reaction reactivity instead of responding, and it's really difficult to listen to hear. And so this work is really about sweeping your own doorstep, it's clearing the energetic muck that you are carrying around from the past, from your relationships, and through apologies and forgiveness and all of these emotional things that we hold on to that add layer upon layer to our grief. Um, that's what we work through. And I had a client that went through the program with me, and she said, you know, people say you have to do the work. This is the work. I know what it means now. Uh so it's it's really deep, it's not easy. It's, you know, people are more apt to spend a couple grand on a vacation for a week than emotional freedom, and I get why. Oh, yeah. Truly, I get why. Yeah. Um, we resist the hard things. And my the question I would pose to people is you've already gone through the worst thing. What you know, it's the suffering can either take us down with it, or it can be a gateway to expanse expansion and growth in our lives. And I'm not saying that we have to have loss in order to grow, but my life experience has taught me and the countless people I've talked to on my podcast over five years, and just people I've worked with that um when you get to the other side of that through deep introspection and reflection and bringing those things to your awareness, um, you disarm the it's almost like you are able to you really essentially process the pain versus all the ways that we avoid it, distract ourselves and push it down. So that is the work. It's it's truly sitting with what's happened in the past so that it no longer dictates the present or your future.

SPEAKER_01

9:36

And that probably helps you too when you know that you'll probably never maybe get an apology from a person or that, but yeah, you're able to work through your own feelings with it. With those right.

SPEAKER_00

9:46

And have and have you tried to forgive somebody who thought that they didn't do anything wrong? Yeah. You know, if it's I forgive you. Well, uh, what did I do wrong? Right. You're stuck in emotional jail. So the beautiful thing about this work is you don't have to confront the other person. It it really is an internal responsibility. It is, it is, it is the individual's responsibility. No one else can heal you.

SPEAKER_01

10:17

It is that's very true. And I I tend to say that I think illness and death brings out the worst in people. Because it is such an emotional um experience. So all of those feelings come into play, you know, the sadness, the anger, like you don't think about all that, but it does, and now you're dealing with all these people and stuff, and it's it's just very difficult to navigate.

SPEAKER_00

10:45

But and I would challenge that and say, but it doesn't have to.

SPEAKER_01

10:48

No, it doesn't.

SPEAKER_00

10:50

You know, and that's the that's the piece I want to bring to this conversation is that um it doesn't have to bring out the worst in you. It can actually bring out the compassion in you. It can bring out the potential in you. Um, you know, I carried 30 plus years of grief and trauma in my body and in my in my life that impacted how I parented my kids um up until 2019 when I went early 2019 when I went through grief recovery myself. And I was not the same person after that. Um, that that experience transformed me. And um, you know, I had a lot of anger in my body and rage that came out in a flood of tears. I didn't think I could cry anymore. Um and you know, when you lose a parent as a child, um, when you're molested, when you have a an emotionally unavailable living parent, um, you know, it's going to change you. And it did, and not for a good way in my early 20s. And so I I had a lot of work to do. I and but it took me 30 years to get to a place where I was where I surrendered to the fact that I can't do this on my own because I'm quite stubborn and I'm quite the skeptic. And and uh I question a lot. And and but one of the things was was I started to question I asked myself bigger questions. How should I put this? When I started to question ask myself the bigger questions, instead of turning those questions onto other people, and I started to ask myself those questions, that's when the ball started rolling for me in the area of personal development. You know, because I thought I was pretty screwed up. I thought, oh my gosh, like I am my life as one meant to be just one of suffering. Like this, is this all there is to life is just to suffer? Like, is this why we're here? You know, and I that question, like, or that that feeling, I guess I should say, um, you know, along with all that anger and having another loss, um, it was actually my father's uncle, or excuse me, my father's brother, my uncle, um, who, you know, when my father died, I also lost that entire side of the family. They were no longer in our lives. And there was this family, this story that was passed down. And um, you know, I was the youngest of four. My brother was five years older, my six, my sister was nine years older than me. So I was essentially like an only child when all this happened and kind of had to raise myself through it. But um my uncle was diagnosed with a with a with brain cancer, and I went to see him, having not seen him 30 years since my father's funeral. Um, and that was in the process of um, I was in the editing phase of my book, and that really uh is what opened me up to the fact that grief is my issue here. And and it actually took me another almost two years before I went to Google to find something to help me, because you know, it like I said, I get the resistance, I get the the like I said, you know, we we've already gone through the hard stuff. Like what what do you have to lose? So um I'm I'm so glad I did that because everything I've accomplished or everything I've didn't gotten done because of that or after that has been because I went through and just became emotionally complete with a lot of relationships that were causing a lot of suffering in my life.

When Avoidance Shows Up As Symptoms

SPEAKER_01

15:00

I I don't think people realize that grief does affect your body. You know, a lot of people they just think, oh, grief, you're you're sad. They they just don't realize the levels of it and how it can be stored in your body and and how one loss can bring up other losses. So what do you say to those people who believe they don't have to dig up the past to heal?

SPEAKER_00

15:23

Well, how is that working for you? Yeah.

SPEAKER_01

15:26

There you go.

SPEAKER_00

15:27

Yeah, how does that work fast? Like how how are you? Yeah, how are you doing? Like, really, like, you know, because if you are projectile vomiting your emotional dis-ease over the people around you, okay, so it's manifesting in that way. If you are like a tea kettle, we are like tea kettles. We either implode or we explode. So either you're having physical manifestations or you are outwardly expressing it with gambling, shopping, relationships, um, anger, um, pornography. I mean, anything that makes you feel better for a short period of time. Even exercise can be a way that people cope. And yes, exercise is healthy, but is it are you doing it to negate or avoid what's really going on emotionally? So I think that um again, it comes back to asking ourselves those questions. We we we kind of live life on autopilot, I think sometimes we get, you know, in the motions of life, and um we we just do not ask ourselves the deeper questions. Because it's hard, you know. It is it is hard because once you once you know you know the answer, right? It's like acknowledging it. Well, now you gotta do something about it, and even not doing something about it is a choice.

SPEAKER_01

16:50

Yeah, I think it makes me think of my mom because uh my mom had a lot of traumas in her life. Uh she was sick as a child three times, and she lost um her cousin when she was 11, and they were more like sisters. And this was back in the 50s where you know, nobody talked about it. And so she always felt she really had that survivor's guilt because people would look at her and then start crying for her cousins. So she almost felt like, you know, and then she had other people through her life um pass away. Uh, you know, her both her parents, my grandparents died young. And, you know, just she tended it because she I think what she did is she took a lot of her grief and she wanted to care for people. So she tended to, whether it was friends or co-workers or whatever, they tended to come to her and she really tried to give people peace and healing. I think probably because she didn't feel that as a child when her cousin died. And that was just because that was the 50s. We just don't talk about it. We move forward, you know, with it. So she tried to always, especially with illness and in that, she really wanted people to to feel some peace and to heal. And like she was there for people to talk about it. She was very open about talking about illness and things like that with it.

SPEAKER_00

18:02

It sounds like she was a light worker in her own time.

SPEAKER_01

18:06

She probably was, although she probably didn't know it. Yeah. An empath. Yeah. Yeah. Oh, definitely. Yeah. She felt things very, very deeply uh with that. And I think that's why for me, she taught me a lot of that. You know, she used to always say with people with cancer, it used to drive her crazy when people would say, they're just not fighting hard enough. They're giving up. And my mom would always say, People, their body gives out, they don't give up. There is a difference. You know, they used to she would get so angry about that. She's like, Stop saying that.

Hospice Denial And Hard Conversations

SPEAKER_00

18:37

She would be like, uh well, and who's saying that, right? The families or the loved ones who don't who can who cannot comprehend their life without that person. Yes. We are taught how to acquire things and people, not what to do when we lose them. And so I think that's the biggest reason why people resist going into hospice earlier is because the family can is in denial. Yeah. The family, I don't think I know this is my this was my training. The family is in denial of what is happening. And when you can get past your own emotional stuff and and it and come to not it's not even acceptance, but embracing what is happening with your loved one, that's when you can have deep and rich conversations. And, you know, we and at end of life, so many people spend so much wasted time talking about the logistics, like the bills, and you know, you have all this the the the stuff, the financial stuff that you have to address. And all so look at all that wasted time. You know, if all of that could be settled, and this is I, you know, estate planning people like an end of life doulas, we, you know, we get this because it's kind of like you're we're partners in partners in um helping people understand that getting your affairs in order early is a gift to your family, to your loved ones, to your It really is.

SPEAKER_01

20:10

I was very grateful that my parents did have the powers of attorney and all that. And they did it because of a um because of something that happened with one of our family members and that made them go, oh, wait a minute. They didn't, and I because I'm an only child, this is they're like, we don't want you to be in this situation we wanna and they told me all about it. I knew where everything was and stuff. Uh so I was grateful for that. And I don't think too, getting circling back to hospice, I don't think people realize how much hospice does for the caregivers and how much they help and make it easier. Like I had no idea, you know, that they were able to, like they brought in the power recliner from my mom. They brought in the hospital bed. You know, some so many people think it's like boom, it's right there when right before you're dying. And it isn't. And they don't take away their medicine, they make them comfortable. And it made it very easy for me and my dad because we knew what my mom's wishes were, you know, like when they, you know, and it is hard. They're asking, you know, do you want a DNR? Do you want a feeding tube? And all this. And we were like, no, because we knew that's what she wanted with it. I mean, it's a hard conversation, but I am grateful that my my mom and my dad have had those conversations with me.

SPEAKER_00

21:25

And do you in in recognizing how important that is, because knowing that that was her wish, you had to accept that, right? Yes. You you were forced to accept that, that this was gonna happen and this was going to be the process that was going to be followed rather than I can't see you go. I don't want to lose you. So let's do everything possible to keep you alive, regardless of you know how you may feel about it, right? Right. And I think that's that's the and that's the that's the importance of having those conversations. Hard conversations, right?

SPEAKER_01

22:01

Yeah. And then it always comes back to that quantity of life versus quality of life. And I and it is hard to look at it when you're you're in that situation to be like, this is not a quality of life. This is not what this person would have wanted. You know, are they really living? You know, and even with my mom's dementia, I could see how she progressed more and more and more. We're like she just, you know, things that happened, I was like, oh, she would never want, like the fact that, you know, she was having accidents, you know, like she she would never have wanted that to happen. You know, so in some ways I was glad that she didn't realize it because that's just not what she would have done with it. And I think in in hospice too, like I said, they bring in so many, there's like social workers and there's chaplains, and in my mom, they brought in the music therapist for her and so many things. And then I had grief counseling available to me, even with the anticipatory grief. Uh, with that, it it just I wish people. I wish people would uh be able to do that more, but it there's so much resistance from people because it it is hard. I you know, I I didn't want my mom to die. I didn't want my mom to have dementia, but here we are uh with it. So what would you say is the one thing people need to know about grief?

SPEAKER_00

23:31

No one escapes it. That's very true. And we all grieve at a hundred percent. And no two people you know, I would I was gonna say no two people grieve the same, but that's not necessarily true because there are myths of grief that we all actually kind of succumb to, and because it's when when grief strikes, right, it we resort to what we know. And what we know is what we learned by watching our parents generally, the people in our environment, the you know, the caregivers and caretakers who shaped us, because we learn 75% of how to resp by the age of three, we've learned how to respond to life by 75% of how to respond to life by age three. The remaining comes by age 15. So by the age 15, we're pretty we've been shaped into how to respond to life. And for most people, I mean it's starting to change now with I think COVID helped to catapult a lot of these conversations, but um again, we resort to what we know and what we know and what we're taught is usually unhelpful and hurtful. So you know, when a child loses a pi a pet, often that's one of the first losses for a child is a pet. Um, well, don't worry. We can get another dog. We'll just replace the loss. Don't feel bad, we'll replace the loss. So one of the myths is don't feel bad. Another one is replace the loss. There's two. Or so then the child learns that, well, I can't talk about my dog or my, you know, because it my parent you you see the response in the parents, right? They don't know how to handle it, and so the child learns to grieve alone then. That's another myth, grieve alone. Yeah, and we all have heard the the phrase time heals all wounds, right? Yeah, that's another myth, right? And we also know that many people tend to keep busy.

SPEAKER_02

25:37

Mm-hmm. Yeah.

SPEAKER_00

25:39

Right? To distract themselves. That's another myth. Keep busy. And another one, be strong. Oh, I hate that one. Gotta be strong.

SPEAKER_01

25:48

I because I I said this, I I asked my grief counselor so many times. I'm like, what does that even mean? Be strong. Like, I want to say, I I guess I had a choice, but it really didn't have a choice. I'm like, what does it even mean? That's people are like, oh, you're so strong. I'm like, okay, like you can be strong or you can be human.

SPEAKER_00

26:08

Oh, I like that. Yeah. Yeah. But these are the myths of grief. So when I wanted to say, like I was about to say, people grieve differently, but really we don't. We all succumb to these myths of grief that these are the things that we've learned. These are the patterns that repeat. This is the education we've received about grief. And so that's why I'm so passionate on the educational piece. And the grief recovery method is very much educational. Um, I I recommend anyone to pick up the book, The Grief Recovery Handbook. You will learn more about grief than you've ever learned. Okay. And that is the book that we use to facilitate the program, the grief recovery method. You can't do it alone. I tried. Um, I did. I, you know, I signed up for the training and I thought this is what's going to help me, and I can help other people. And it was going to be a five-hour drive, and then it was canceled. And I thought, oh my goodness, like, and then it was like the universe asking me, How bad do you want this? So I signed up for the training in Austin, Texas, and I invested way more than I would have needed to. But um, I just felt like this was going to be this was the answer for my heart and what I was looking for. And it truly ended up being that way. And um, you know, I you gotta follow the nudge. If something is nudging you and it keeps noodling at you, um follow those breadcrumbs, you know. And when that initial training was canceled, my husband said, you know, you've taught yourself so many things. Just just get the book, teach yourself. Like you don't need anyone to train you. And so I got the book and I read it. And I should I should have grabbed my copy because it's full of doggy ears and highlighting and um post-it notes. It's like we cannot heal on an island, and that's why on my podcast, Grieving Voices, it's me on an island with a megaphone. That's how you feel, right? Yeah, that's how you feel.

SPEAKER_02

28:07

Yeah.

SPEAKER_00

28:08

And you know, just you just want to scream out to the ether and you feel like you're alone. Yeah. But it is the one thing that unites us all. We're no one's escaping it.

Finding Support Books And Programs

SPEAKER_01

28:19

No, no, we're not. And I typically am not like a support group type of person, but like I do go to uh the hospice that I my my mom was with, they started a parent support group, and I look forward to it every month that I go to it because I don't feel so alone. I so many things are so similar. All of our stories are different, but yet there's so many things and so many feelings, and I just feel for that hour and a half or that I do feel supported, and sometimes I don't even have to say anything, but sometimes I feel that comfort because it's like you're not alone with it, you know, and and you also hit know that you have other people that understand how you're feeling, and you can talk to them about it as well for that. I on your website, I love this, it says, Welcome, friend, from the fog of loss to clarity of peace. I love that saying uh with it. Thank you. Um and your website is theunleashedheart.com, correct? Um and I saw when I was on your website, I saw you have on here it's called Unleashed Letters. What is that?

SPEAKER_00

29:29

That's my newsletter.

SPEAKER_01

29:30

Okay.

SPEAKER_00

29:31

So bi-weekly newsletter.

SPEAKER_01

29:33

Okay, uh, with that. And then you also have something on there that's spank sessions? Spark. Spark, sorry. I can't read my own writing. Okay. Yeah, I can't read my own writing. Spark sessions. What is that?

SPEAKER_00

29:45

Spark session is really it's um people who are a little bit maybe further along in their journey. They're kind of on the other side of the grief, and it's like I've worked through all this stuff, and I there's something that there's something noodling at me that I really want to do, and I just I want to brainstorm with someone, I want um some encouragement or I need some insight. Um, yeah, it's it's like I'm a co-creator with someone that is just looking for their spark. And um, yeah, I consider myself if someone wants to be pushed off the metaphorical cliff to get something accomplished or to set out to do something, I can be the pusher. I tend to push people off cliffs. So that's not always you're not on your way down. It's okay. It's you don't need you're not gonna have certainty and and embrace the uncertainty of life.

SPEAKER_01

30:38

Well, that's not always a bad thing. You have a lot of meditations on your website too, I saw that people can create meditations, yeah. Uh with that. And then your book is The Guided Heart Moving Through Grief and Finding Spiritual Solace.

SPEAKER_00

30:52

Yes. So um that was before grief recovery.

SPEAKER_01

30:56

Oh, okay.

SPEAKER_00

30:57

I would write a very different book now. Okay. I actually mentioned um the stages of grief. And yeah, there are no stages. It's um I actually had Ken Ross, the son of Elizabeth Kubler Ross, whose work is yes, so Ken Ross was on my podcast and we talked about that actually. And um, her work was about with people on hospice and terminal illness, yeah.

SPEAKER_01

31:23

Yeah, I didn't realize that either till I went to hospice and they explained it that that was actually she wrote it as the stages of people who are dying, but somehow it just all became, oh, this is your stage of grief. And it's like, no.

SPEAKER_00

31:39

Everywhere. Yeah.

SPEAKER_01

31:40

Even the Simpsons.

unknown

31:42

Yeah.

SPEAKER_01

31:43

Uh so why do you think boundaries are important while you're grieving?

SPEAKER_00

31:50

Well, what I would say about boundaries, me personally, is I didn't know a boundary if it slapped me in the face. Okay. Most people wouldn't know a boundary if it slapped them in the face. And most people, when they're confronted with a boundary by someone else, they tend to get defensive and not like it, right? Yes. And people who get defensive and not like the boundaries of other people probably don't have their own.

SPEAKER_02

32:14

Oh, okay.

SPEAKER_00

32:15

You know, when we are like for me personally, um, my boundaries were were basically non-existent because, you know, I was violated as a child, and there was, you know, no privacy, my privacy was violated in many different ways. And I didn't understand, I didn't know what boundaries were. Like I wasn't taught what were boundaries. And um, and that I think that's how a lot of people are raised. We don't, we really don't understand how they can provide boundaries, they can provide safety, they can provide a sense of security within yourself and your body. Um, they can be, but they can also be walls, right? Like true. There can be, they can be emotional walls that we build in order to keep ourselves on an island because of fear or uncertainty, right? Like boundaries can be unhealthy. They they very much can be. But I highly recommend the book Boundaries. Okay. Um, Dr. Townsend, and there's another doctor. Um, that's generally the book that I recommend to for people to read after they've gone through grief recovery. Um, it's excellent, excellent book on boundaries of all types, of all kinds of different boundaries. Uh did I answer your question? I feel like I didn't, but I kind of went on a tangent.

SPEAKER_01

33:38

Oh no, I think it is because uh I think bound boundaries are hard. I I know I have a hard time like being able to sometimes it's just like to say no and not feel guilty. You know, it I the people pleasing. Yeah, I think it is. I think it's important. I think it's it is hard while you're grieving, or even when you're taking care of your loved one, sometimes you you have to, and then it it's it can be very difficult, you know, to be able to say, no, I I I can't do this, or no, I'm I'm gonna do this today, or like they always uh one of the things when hospice a lot of times will talk about that to have your plan B, especially like it during holidays or special occasions, where those events can be really hard when your loved one's not there, and that it's okay if you tell someone, I'm gonna drive myself, and if you leave earlier than expect it, you know, to be able to do that because not everybody will understand that, but it it can be hard to to say, no, I'm gonna do this bound, you know, I'm trying to put boundaries up, you know.

SPEAKER_00

34:42

Well, and I think a a big part of it too is, and this is I'm I'm navigating this in the last few years too, as I I learned more about myself, the importance of informing people. Um, informing doesn't mean asking for permission. That's true. You know, if you would say to someone, you know, someone asks, invites you to something, and you're not, you know, you can say, if you're not sure how you're gonna feel, like it's not the events, not for like two weeks. Well, I'm unsure today, but ask me three days before, a few days before, and I'll see how I feel. That's honest. You're not saying yes, you're not saying no. It gets closer to the event, some they ask you again, and you can respond with however you're feeling. No, I'm I'm really not feeling comfortable with going at this time. Or, you know, you know what, that sounds really nice to be out with people and things like that. I'll come, but I'm just gonna make sure I drive myself or, you know, just know that I might leave early if I'm feeling like I need to rest. You know, it's just being emotionally honest with compassion and with informing without asking for permission.

SPEAKER_01

35:49

It is, and it is a it sounds so easy and yet it does. I know.

SPEAKER_00

35:55

And then you let's and then you have the dynamic too. Let's say it is your parent and you are the caregiver. That's where boundaries can be really difficult, right? Yes, yes.

SPEAKER_01

36:05

Yeah, you know, yeah, with that and uh and with my dad still now too. So yeah, it's that fine line you walk uh with it.

SPEAKER_00

36:14

If you didn't have those things established growing up, it's it's like adulthood becomes the training ground. Crisis becomes the training ground often for people. And and that's like and that's like the worst time when everybody's emotionally amped up, right?

SPEAKER_01

36:30

Right. Yeah, it is. It can be very, very difficult. And then also, too, you learn how people handle crisis. Um, I I I I joke about myself, like I'm one of those people that in the crisis, I'm fine. You know, I'm I am thinking three steps ahead. We need to do this, this, or this. But then like it could be weeks, months, whatever later on, and something really simple, like my TV or the internet's not working, and I just completely fall apart. I I'm just like, don't mess with that little stuff. The big stuff I handle, but um, you know, but then other people are different where they completely fall apart in the middle when it's happening, you know, and that can be hard.

SPEAKER_00

37:09

It's like dying by a machete versus a thousand paper cuts.

SPEAKER_01

37:12

Right, yeah, you know, and that's hard to navigate to, you know, when you're with all this what going through.

SPEAKER_00

37:18

That was probably a very bad analogy, but it's you know, right? It's just it's that like eventually the same result is gonna happen, right?

Pet Loss And Replacing The Loss

SPEAKER_01

37:26

It's exactly collapse. Yeah, yeah, that's what I said. I go I I can handle that, but don't mess with my TV. I literally fall apart. I'm like, I get, you know, I'm like, oh my god, this is insane. But that's you know, but everybody's different, you know, with that as well. And uh the circle back when you were talking about pets and things like that too. I think it's important. Yeah, you can't replace the pet. Like you can get another dog or cat, but that particular one that passed will always be in your heart because they're all different, you know. And they're very, they they also can help with healing too, I think. They're very, they're very therapeutic, those puppy dogs.

SPEAKER_00

38:06

Oh, I I replaced the loss when my youngest started kindergarten. Um, you know, I I was actually closing my business I had at the time. I that's when I started to blog and write and things like that. And I was, you know, I had my identity wrapped up in being a parent and being a photographer at the time. And so like those things ending, I didn't know how to cope with that. And I thought, I need a dog. Like I said to my husband, I think I need a dog. And I did all this, you know, and and I know now it was just like this, it was a way for me to distract myself, give me something else to focus on and to feel better. Um, so yeah, I I replaced the loss. Well, and we still have him today. He's 12 years old and he's a fantastic dog because I'd, you know, poured hours and hours into research and how to choose a dog and all this stuff. And yeah, I mean, there is no replacing him. He is like the perfect exactly the perfect dog, yeah.

SPEAKER_01

39:07

Yeah, yes. I always say the whole world can turn against you, but your dog will always be there for you. That's true.

SPEAKER_00

39:14

That's my and that's and that's why it's it is a devastating loss. It is a loss of a family member, a companion. And I do have a program for that. It's on my website.

SPEAKER_01

39:24

Yes, so your website is the unleashedheart.com. And so you have many different programs that people can go to and and and work with you as well, correct? I can meet you where you're at. Okay.

SPEAKER_00

39:36

A variety of different things, lots of free stuff too.

SPEAKER_01

39:39

Oh, free stuff is always good. We like that.

SPEAKER_00

39:41

So ebooks. Yeah, there's a free um energy quiz, there's a grief quiz, there's um the grief quiz kind of matches you with where you're kind of at with the service I offer, kind of as a matchmaker in that way. Like where are you in your grief? Um, but yeah, there's something for everybody there. Okay.

SPEAKER_01

40:01

Well, thank you so much for joining us. This has been a very I I've I've learned a lot in this conversation. So I hope I'm not sure.

SPEAKER_00

40:08

I'm glad. I hope I I I really just want to leave people with the fact that suffering is um sometimes of our own doing, and it doesn't have to be that way. And I just want people to understand that um the worst has already happened and to hold on to the hope that there can be the sun, the regardless if we can see it or not, the sun is shining.

SPEAKER_01

40:33

That's very true. Yes, that's very true. Well, thank you so much. Uh and we will have the website information um on our website as well, too, so people can check out all your all of your services that they can work with you for. So thank you so much for having me. So hopefully you've enjoyed your cup of tea, your cup of coffee, or your glass of wine if it was a really bad day. And hopefully you've learned a lot today, and you know, most importantly, you are not alone in all of this. And please join us for now another episode of Patty's Place.

Welcome To Patty’s Place

SPEAKER_00

0:18

Welcome to Patty's Place, a place where we will talk about grief, dementia, and caregiving. I'm your host, Lisa. I named this podcast in honor of my mom, Pat, who passed away from dementia about two years ago. So grab your cup of tea, your cup of coffee, or if you're having a really bad day, a glass of wine, and come join us, and just so you know you're not alone. So today our guest is Cindy J. Burns. She is a grief coach, a grief doula, and a certified life purpose life coach and a happiness coach. So Cindy, welcome to Patty's Place. Thank you.

SPEAKER_02

0:52

Thank you for having me.

SPEAKER_00

0:54

Oh, I'm I'm excited about this. So uh can you tell me what what is a grief doula? A grief doula is um have you heard of a death doula? I I have, but I don't exactly know what what they do.

SPEAKER_02

1:09

The death doula helps um prepare the family and the patient for um for want of a better word, a beautiful death. Okay. To die die death with dignity. Okay. But they also um help with advising on paperwork. Um they try to encourage the um patient to do a remembrance video or book or you know, something to to record their thoughts and feelings and things that they've you know wanted to say and that kind of thing. So a grief doula comes in after the fact. Okay. And um so I I can work with people who are freshly grieving. Um that's what the doula part is. Okay. The life purpose and happiness coach comes in a little bit later.

From Living In Grief

SPEAKER_00

2:15

A little bit like that. So I was gonna say, so with uh I'm sure when you're dealing with the end of life, there's that anticipatory grief. So is that what the uh the death doula would deal with, or was that something? Oh, okay. For that in terms even with the family members and that, that's what they would and they're usually present with the family at the time of death. Okay.

SPEAKER_02

2:38

If they can be.

SPEAKER_00

2:39

Okay. So I noticed you have on here on your and we'll talk about your website too as well, but how do you allow grief to become a powerful source of strength and growth?

SPEAKER_02

2:53

Well, what I do is I work with widows primarily. I'm a w I call myself a widow coach now. Okay. And um they're usually at a point in their grief where they're just tired of pretending to be fine. And I help them go from living in grief to living with their grief.

unknown

3:17

Okay.

SPEAKER_02

3:17

So you lose your identity a little bit when you lose your spouse. Um, you're not the same person you were when you were part of a couple, but you don't know who you are now. You know, it's it's hard. You have to figure out who you are, who you want to be, and I help with that.

SPEAKER_00

3:38

You you mentioned that you help them to go from living in grief to living with grief. Correct. So what's like that transition? Like what what's the difference between living in grief and living with grief?

Why Spousal Loss Feels Different

SPEAKER_02

3:51

When you live in grief, grief is your um primary emotion. It's it's what colors every day, every moment of every day. Um, living with grief, grief never goes away completely. Right. And living with grief means it's kind of under the radar. You're actually living a life, but you don't have to um, but you're not crying all the time, you're constantly in grief. Does that make sense?

SPEAKER_00

4:29

Yes, yes, yes, it does. And you mentioned you call yourself more of a widow coach. So can you talk a little bit more about how is losing a spouse different, a different type of grief?

SPEAKER_02

4:42

All grief, all grief is terrible. Yes, every grief is different. My father died in 2001, my husband died in 2011, exactly 10 years to the day of my father did. Okay. And my mother died two years later on Friday, the 13th of December in 2013.

SPEAKER_00

5:09

So I actually uh December 13th is actually uh I had two family members pass away on that day. Not on the same year, but the year after the next the following two years. So yeah. Something about that date.

unknown

5:23

Yeah.

SPEAKER_02

5:24

Each each grief, each time I grieved, it was a little different because of my relationship with one of my parents or my husband, because of um you you kind of expect that you're gonna outlive your parents. So it's hard. It's very hard, especially if you're really close to your parent. Um but unless they were part of your everyday life, you can you can go on. You can you can live a life and they're not top of mind after the initial grief. Right. Um, you know, eventually they're not top of mind. Whereas a spouse, they're part of your everyday life. You see them in the morning, you see them in the evening. If they're retired, you see them all day long if you're also retired. Right. Um, you make plans for the future, you talk about what you're gonna do in five years or whatever, you know, someday when we win the lottery, kind of thing.

SPEAKER_00

6:37

Right.

SPEAKER_02

6:38

And when that's gone, it's it just takes away your life because you don't know what's now now you have to create a new future for yourself, and you can't even think about it, you know, you can't imagine it.

SPEAKER_00

6:58

That makes sense. It really does that it it is a different type of grief with that.

Loneliness And The Baby Steps Plan

SPEAKER_02

7:04

Now I have a friend who um her mother was part of her daily life. They talked on the phone like 10 times a day. You know, they lived near each other, they visited, she saw her every day, and she died last year on um Mother's Day, and she's still grieving hard for her because she was part of her life.

SPEAKER_00

7:26

Yeah, yeah. Yeah, I mean I I know what you mean when you you somebody's part of your life every day, it just becomes different uh for that. So what do you tell widows or widowers about handling the loneliness? Because my dad talks about that. You know, my mom and dad were married 54 years. Oh wow. So yeah, so uh how do you help them with that?

Returning Home Without Them

SPEAKER_02

7:54

Yeah, I was married for 33. Um baby steps. Okay, you don't you don't become unloadly you know, in one day. Right. What I do is I take people through um a series of baby steps. I have them try to think of a small goal, something that's fairly easily achievable, but they haven't done yet. Like eating in a restaurant alone. That's that's a big one. Um, that's a hard one, especially for women to do. So we do little baby steps. You know, it's like one day you're gonna get dressed up as if you're going out, but you don't have to. Another day you're gonna get dressed, you're gonna get in your car, and you're gonna drive past the restaurant that you want to go to. You know, little baby steps to help ease you into it so that by the time you actually go in and sit down, it's not so scary anymore. Um, so it's getting used to a new life, a new way of life. And for loneliness, you just you've got to get out there, you've got to find an interest. It's really hard to make friends as an adult. Yeah, it is. And unfortunately, when your spouse dies, you lose friends because they're part of a couple and they don't, you know, they don't want to make you feel like a third or fifth wheel. They um some people are uncomfortable around people who are grieving. Yes. So they don't reach out. Others are like, but we'll give we'll give him or her some space. Well, that's okay for maybe the first day or two. Right, right. You need to show up. Yeah. Um, that's that's my that's my advice for people who who know somebody who's grieving. Show up. Um but for the for person who is grieving, show up yourself, you know, reach out to people that you may have become estranged from for no, you know, no good reason, you know, no apparent reason. You didn't have an argument or anything like that. It's just you've lost contact. Um find a club. You know, find something that you're interested in. Um, join an art club, take some classes. Um you know, I joined Toastmasters. Okay. I joined I joined an art club and I was terrible at it. But I enjoyed the I enjoyed the camaraderie and the people that I met there.

SPEAKER_00

10:49

Um my dad's been doing some volunteering and that, so that that helps him uh with that. Yeah, that's another thing. Volunteer. What would you say about I know that for people who obviously you probably live together if you were if it was your spouse. What do you what advice or what do you say how hard it is being in that home now that they're not there anymore?

SPEAKER_02

11:15

When I after my husband died, he was in the hospital from May through August.

SPEAKER_00

11:20

Okay.

SPEAKER_02

11:21

And I stayed there with him the entire time. So when he died, I went back home to my house, and I just stood there with my leaning up with my back against the door saying, I can't go in there without him. And I think that was the first time my kids ever saw me cry. And um so that was difficult. But then obviously I had to go in and I did it. You have to work through um the pain. You've got to take that step, and chances are it may not be as bad as you thought it was gonna be. And if it is, well then change your routine or don't go in that room, or you know, keep his closet closed, you know, or you know, something like you know, different things to trigger. Um, you can either choose to embrace it and create um like a memorial table where you've got their picture and you've got little things that remind you. I've got this little guy here. Um that reminds me of of Dan. And um little things like that. The the when you look at it, you smile. And those those are very helpful. It's now if if they died in the house, that's difficult.

SPEAKER_00

12:54

Yeah.

SPEAKER_02

12:54

That is difficult, but maybe um not remodeling, but rearranging the furniture in the room they died in, um, painting the walls, put up new curtains, you know, whatever. Small things, don't change it completely. Right. But small things so that it doesn't remind you of them every time in a bad way. Okay. Every time you walk into the room.

SPEAKER_00

13:25

Right, because they may find comfort. You might find comfort if it reminds you of them. So then that's okay if you find comfort, or if it takes you a while to clean out some other things and stuff like that. You know, I I I think there's like two worlds of thought. Some people are like you gotta do it right away, and other people tell you it's okay. I think the combination of both, I think, is probably I don't want to say the healthiest, but maybe the easiest. Because some things you you do want to go through, and other things you're like, I just can't do this right now, you know. Exactly.

SPEAKER_02

13:57

Um he collected um magazines about railroads. Okay. And I knew I knew a fellow at church, so I gave him the magazines. That was that was easy to do. I still in my in the closet, I he was a um police officer before he retired. So I've got two of his uniform shirts in the closet still. And after he retired, he pretty much wore only tie-dye shirts. Okay. T-shirts. So I've got two of those in the closet as well. They're off to the side, and I, you know, I don't see them or notice them every day. But when I do, it makes me smile.

New Tasks, Rage, And Asking Help

SPEAKER_00

14:38

Yeah. Um I think, you know, I tell people too, yeah, you know, like sometimes I'll wear my mom's um some of her shirts or things like that, and it it brings me comfort. You know, there's a little jacket she used to wear all the time, and sometimes I'd, you know, put it on, obviously if I'm a cold, but or sometimes I just put it on because I want that comfort because she wore it all the time.

SPEAKER_02

14:56

Uh my mother's nightgowns.

SPEAKER_00

14:59

Yeah. Yeah. You know, sometimes it just or you know, something that they loved brings you, I find comfort with it. Um, what advice do you give widows that are about handling things that their loved one used to handle?

SPEAKER_02

15:14

It again, it depends on what it is. Um, if it's the finances, I would suggest if you've never handled finances before, um, and it's more than just paying the bills, I would I would talk with a financial planner. It does you most financial planners will work with anyone. You don't have to have a million dollars to consult a financial planner. Or go to your bank, make an appointment with a banker. That's free, you know. Um, and usually with a financial planner, your first visit is free as well. The consultation is free. Um, and they they love to help people figure things out, you know. They're number people. Right, right. I love that. I remember when my father-in-law died, my mother-in-law had never written a check. So my husband had to go over and teach her how to write a check. Um, so turn to people that you know and that you love, take a class if you need to. If it's something like handyman kind of things, or um, you know, changing the oil in your car, those are kind of things that you know you might want to pay somebody to do. Or find find a relative or somebody that'll do it for pizza or something.

SPEAKER_00

16:41

Right, right. What do you say for the anger? Because I know sometimes the anger comes up of the fact that you know they used to do this and now they're not here.

SPEAKER_02

16:51

Yeah, I was not prepared, I didn't call it anger, I called it rage. Okay, okay, it was I was not prepared for that. I I didn't expect it. Um there are a lot of cities and towns now have smash rooms or smash yards. You if they don't um go to like a local salvage yard or trash dump or something and ask, you know, can I break things here? You know, can I come in and break things? Yeah. And because that's what I wanted to do. Yeah. But I didn't have I didn't want to break anything of mine. Right, exactly. Yeah. And I actually thought about and I I'm scared to death of guns when my husband had it for his his work, I wouldn't touch it. Um, but I actually thought about going to a gun range and renting a gun and doing some target practice.

SPEAKER_00

17:57

Yeah.

SPEAKER_02

17:57

But I didn't, but I thought about it, and yeah, sometimes just thinking about it makes you feel better.

SPEAKER_00

18:03

Right. Because I know that brings on even more grief in that because it's like they used to do this, whether it was taking care of the car, like they took it in for an oil change or whatever, and they're not here anymore, or especially or repairs around the house and stuff like that, where you just feel like that's that trigger, like it all over again, because they're not here and they should be here to take care of it.

SPEAKER_02

18:24

Yeah. The first year I let my um my car license plates and the inspection lapse because Dan always did that. And it just didn't even dawn on me that it needed to be done at, you know, on a certain I never looked at the date until I got pulled over. Okay. But he was nice. He he let me he let me go. He said, just get it done. Okay. Yeah. Um, but yeah, you know, when when they do things like that, it is it is hard to to figure it out, but it gives you a sense of pride, it gives you a sense of accomplishment when you do figure it out.

SPEAKER_00

19:07

Yeah, because it is it can be overwhelming, you know.

SPEAKER_02

19:11

Very much so.

SPEAKER_00

19:12

Yeah, it can be. So do you tell people that it's okay if they just start crying about it or they feel rage?

SPEAKER_02

19:19

Oh, yeah.

SPEAKER_00

19:19

Like it's it's just part of grief.

SPEAKER_02

19:21

And I tell everybody, feel your feelings, don't swallow them, don't keep them inside. I did that. Okay, I didn't want my sons, they were adults, but I didn't want them to see me, you know, crying or miserable. But the thing is they kind of wanted me to so that they could help comfort me, because that would have helped comfort them. And so I kind of robbed them of that, and then I ended up with a bleeding ulcer a few years later.

SPEAKER_00

19:56

So yeah, that's not good.

SPEAKER_02

19:58

Yeah, that's so yeah, feel your feelings. Uh, they can be overwhelming. You can start crying and you think you're not gonna stop, but you do.

SPEAKER_00

20:07

Yeah.

SPEAKER_02

20:08

You stop at least for that next hour, yeah.

SPEAKER_00

20:12

Yeah, and to also it's okay to ask for help too.

SPEAKER_02

20:15

Oh, yeah.

SPEAKER_00

20:16

You know, if it if it's something that you've never done and and your spouse used to always do it, then ask somebody, hey, you know, do you know a good place to take my car? And sometimes as simple as that, you know.

SPEAKER_02

20:28

So many places um have a Facebook group where you can ask questions like that. You know, a local Facebook group, and you can go in and you can ask, you know, has anybody got um, you know, a car repair place that you would recommend? And you'll not only get the recommendations, but you'll also say, here, stay away from this one.

Joy, Laughter, And Gratitude Practice

SPEAKER_00

20:49

Right, right. Uh for that. It helps. Yeah. I know my dad um he struggled with cooking because my my mom did all the cooking. So, like things like that. He actually went to um it it in our the hospice that we go to, they actually had a um uh like a a session, a training session or seminar about cooking for one and how to you know how to work through all that because it is hard if you're always that other person always used to do the cooking, now you have to do that. That can be overwhelming too.

SPEAKER_02

21:23

You know, my husband did the majority of our cooking. I can cook, I just don't like it.

SPEAKER_00

21:28

Exactly you know, yeah, so it's like okay, but you have to eat, so now what do you do? You know, yeah. Um to do that. So you're also a happiness coach. So what is what is a happiness coach?

SPEAKER_02

21:43

I teach people or advise people to start looking for just small things that can cause them joy. Little tiny microseconds of joy if you have to. Um, for me, I don't like the color yellow. Okay, not in close. Clothing, not on walls, but seeing a really pretty buttery yellow always makes me smile. So I look around you know my room and see what I can find. It's yellow. Um, or I go online and look, you know. Um I also have a I haven't listened to it in a long run, but I have a a um sound file of a baby laughing. Because I'm sorry, you can't not smile when you hear that. Oh, yeah.

SPEAKER_00

22:33

Sometimes I like follow the and I know they're all AI, but they're the AI babies like on Instagram. And I can't help it, it makes me smile. Okay. Exactly.

SPEAKER_02

22:41

So you find small moments of joy and eventually they add up. I was a pessimistic optimist. Okay. Where I didn't re I didn't really expect the good things to happen, but I hoped they would. Now I just I know things are gonna work out the way they're supposed to. I'm definitely an optimist. I I do, I smile and laugh. More times than I don't, I am mood-wise, I'm a completely different person than I used to be. I'm not quite sure when or how that happened. I think it was over time, you know, it was gradual, but also, you know, taking the happiness coach course helped a lot too.

SPEAKER_00

23:33

And would you tell people that it's okay to laugh when they're grieving, that it's okay to feel joy and laughter, that that's all joy and grief.

SPEAKER_02

23:43

Yeah, joy and grief can exist at the same time. They can coexist, they're not mutually exclusive.

SPEAKER_00

23:48

And and it yeah, it's okay, you don't need to feel guilty if you're laughing.

SPEAKER_02

23:53

No, because guilt is a big part of grief.

SPEAKER_00

23:56

Yeah.

SPEAKER_02

23:57

And there's there's no reason for most of it. Um, so you've gotta you've gotta come to grips with that. You've got to forgive yourself, you gotta forgive the doctors, you gotta forgive whoever you're you know, blaming. And forgive yourself when you laugh, you know. We laughed at my husband's um calling hours. My sons, we have six sons, and they're all they all try to outdo each other with the comments and the sarcasm and all that. And you know, it's the way we deal with things, it's dark humor. Yeah, but we laughed, and people probably thought we were nuts, but that's okay. That's who we are.

unknown

24:39

Yeah.

SPEAKER_00

24:40

Yeah. I I also saw on your website you have um that you say gratitude plays a role in grief, and you offer a 28-day gratitude journal. So how does how does gratitude play a role in grief?

SPEAKER_02

24:54

When you consciously look for something to be grateful for, eventually you don't have to look for it. It's just there. Okay. And I don't know if it's true, but they say that 28 days is what it takes to establish a habit. I think it's longer than that, but so yeah, learning to be grateful for little things. You don't have to be grateful for everything, but just little things, like the sun's shining today, you know. Um, my neighbor's rooster is growing, you know.

SPEAKER_00

25:31

Well, like yesterday, I was grateful because I had to take my dad um to the VA. And so it was supposed to storm, and I was just like, could you just please not have it storm when I'm driving? Because it's like an hour away. I'm like, I just don't want to drive in the rain to and from, and and it didn't. So I was like, Oh, thank you so much. Like, I just didn't want to have to deal with that, you know.

SPEAKER_02

25:52

And yeah, you don't have, I mean, I'm a Christian, but you don't have to be in order to feel grateful. Right. You can be you can just be happy that something good happened.

SPEAKER_00

26:03

You find a good parking spot. I'm always grateful for that too.

Coaching Support And Getting Unstuck

SPEAKER_02

26:06

Yeah, it's amazing all the little things, no matter how bad you think your day is going, when you make a conscious effort to look for something good happening in that day, it's amazing how it can change your whole mood and attitude for the day.

SPEAKER_00

26:24

It is, yeah. Like I don't think about it, but when I do try to consciously do this, it does make a difference. You do feel better with it. And like I said, start out small, like okay, it just didn't rain when you were driving. I I'm grateful for those things, you know. So you also work with people on your website, correct? People can work with you, uh, set up time to work with you together.

SPEAKER_02

26:48

Oh, yeah, yeah. Um, I work online primarily. Um I am working on setting up a grief group at my church. Um, but that's that's a little different. That's gonna, you know, that's gonna include anybody that wants to come. It's not part of my um business plan. Um, but yeah, I generally work with people online. We can do it through Zoom, we can do it um, you know, whatever video program they like to use, or we can just do it over the phone. You know, whatever, whatever the um the client is comfortable with.

SPEAKER_00

27:31

And your website is cindyjburns.com, correct? Yes. And that, and they can um like you said, you could do either for the the grief doula, the grief coach, life purpose, life coach, you kind of cover it all, happiness coach, everything.

SPEAKER_02

27:48

Yeah with that. Um like I said, primarily I consider myself a widow coach. But if somebody wants to talk to me, I'll talk. I we I have a 20-minute um free consult to see if you know we get along and if if you think I can help. Um and then there's for widows, I have I just put it up this weekend, I have a quiz you can take. Okay. And that's at Cindy J Burns.com slash quiz and then the number two. Okay. Because I had to try it twice. So they can't with that and that quiz kind of helps to see if it's Yeah, it's just a f it's just a four question quiz and it's it's not difficult. You can do it in under two minutes. And it it kind of helps put things into perspective. You kind of figure out where you are in your grief, what's causing you the most to feel the most feeling stuck. Okay. Because, you know, it took me seven years to realize that I was stuck in my grief. And I pulled myself out of it alone. And once once things started to turn around for me, I decided that I didn't want anybody else to have to go through that alone if I could help it. So that's where my business came into.

SPEAKER_00

29:23

How did you know you were stuck? Why do you say you were stuck for seven years?

How To Reach Cindy

SPEAKER_02

29:27

Because I was by that time I was retired, my kids were all grown. There was a few years in there where some of my children needed me to be there physically, one in Colorado, one in Virginia Beach, and um for one was multiple years, and the other was um a whole summer. But they they had different things going on, and um but after seven years, I was finally home. I was retired, and I had to get out of bed in the morning because my mattress was terrible, and if I didn't, I'd end up with a backache. But I get out of bed and move to my recliner and pretty much stay there the entire day watching TV or playing on my phone. And um one day I just I just looked at my life and I thought, I could live another 20 or 30 years. Do I want this to be my life for 20 or 30 years? And of course, you know, the answer was a big, huge no way. So that's when I consciously um made an effort to change. And it was it was baby steps, it took a while, but I'm so glad I did. And I wish I I wish there was a me back when I needed a me.

SPEAKER_00

30:55

Yeah, I I can understand that uh with it, you know, and it is hard. It's hard when you're in the middle of all of going through all that. You sometimes just don't know which way to turn with it. Yeah, so well, thank you so much for joining us today. I really appreciate this. Thank you for having me. I enjoyed speaking with you. Yes, so the website is Cindy JBurns.com, so you can you know learn all about her services and hopefully you can help uh other people.

SPEAKER_02

31:21

Some of the links are broken, but I'm working on fixing that.

SPEAKER_00

31:24

Okay. All right. Well, there's your your contact one though works, correct? Yes, yeah, there's contact one. Okay, people can always do that uh for it. So, well, I hope everyone has enjoyed our conversation today for it, especially if you are a widow or widower. So I hope you enjoyed your cup of tea, your cup of coffee, or if you had that really bad day, your glass of wine. Uh, and please leave us a review, subscribe to our YouTube channel, and please join us again for another edition of Patty's Place.

Welcome To Patty’s Place

SPEAKER_02

0:17

Welcome to Patty's Place, a place where we will talk about grief, dementia, and caregiving. I'm your host, Lisa. I named this podcast after my mom, Pimp, who died from dementia about two years ago. So grab your cup of tea, your cup of coffee, or if you're having a really bad day, a glass of wine, and come join us so you know that you're not alone. Today I'm very excited about our guest. His name is Sam Simon and his wife, Susan. He wrote the book Dementia Man, an existential journey, choosing life and finding meaning with El Sunday. Also has a woman act polemy as well. So, Sam, welcome to Penny's Place.

SPEAKER_05

0:55

Thank you very much. And it's great to be at Penny's Place.

SPEAKER_02

1:00

Yes, um, I'm I was very excited when I read your article um about your womanic polemity and and your book as well. So minimum of people were melomined, then Alzheimer's is the leading cause of death, and it's the only woman without a cure. Right. And you remedy in there then for those of out of your book, you say for those of some form of cognitive disease that affects the double or triple number, and then it affects two whole generations of society with it before that. And you said your goal is to share your story to invite people to join a revolution.

SPEAKER_05

1:40

Yes. Well, a revolution and to reimagine, if you will. Well, I I have another bit of news that I've just come to realize.

SPEAKER_03

1:52

Okay.

SPEAKER_05

1:54

2000 and 2026 is the first year that a baby boomer turns 80.

SPEAKER_03

2:05

Oh, okay.

The Coming Alzheimer’s Wave

SPEAKER_05

2:07

I did not know that. And um I until it didn't occur to me until recently. And um, of course, the baby boomer generation is gigantic.

SPEAKER_03

2:19

Yes.

SPEAKER_05

2:21

And my research is saying that in about five years we'll have the largest 80 plus year old cohort in the history of the country. Um, and getting prepared too, I was trying to find out well, who was the first baby ever born? Who was the big first baby boomer um ever born in 1946 because they turned 80 in 2026?

SPEAKER_02

2:51

Yeah, my dad turns 80 in September. So he was born in 1946. Yeah.

SPEAKER_05

2:56

There you go.

SPEAKER_02

2:57

There we go.

SPEAKER_05

2:58

So I tried I found the name of uh of a it's public because she had promoted Carol. I'm looking at Carol Trackman from Richmond, Washington, who was one of the first babies born in uh 1946.

unknown

3:17

Okay.

SPEAKER_05

3:18

But but uh wow. Yeah we we we are among a growing cohort of folks. It's not only age, but um I was diagnosed with Alzheimer's in 2022, so I was about 79.

SPEAKER_03

3:35

Okay.

SPEAKER_05

3:36

I'm sorry. No.

unknown

3:42

So 80.

SPEAKER_02

3:44

So you're in your you're you got diagnosed in like your your late 70s then. Okay.

SPEAKER_01

3:49

Yeah.

SPEAKER_02

3:50

So you talk about you want to be a patient cognitive voice for that. You want your work to be referred to that. Like, can you talk about that a little bit?

SPEAKER_05

4:04

I want to be a a voice for meaning for meaningful life with this disease.

SPEAKER_03

4:11

Okay.

SPEAKER_05

4:12

I want to be a counter voice um to a narrative that's out there that says life with this disease is not worth living. And there's so many stereotypes. In fact, the word itself, dementia, evokes end stage.

SPEAKER_03

4:34

Okay.

SPEAKER_05

4:35

And so much of that is out there that does that, that pictures a person with quote dementia just staring into the sky in a senior, you know, at a very advanced stage. And when I was diagnosed, my neurologist said it could be five to ten years before things got a lot worse. And um, well, that would be if I figure it out if I was right, that could be by the time I'm somebody 89 or something.

SPEAKER_02

5:11

I like I like how you wrote in your book when they tell you that five to ten years, you're like, is it from the time you noticed a symptom or is it from the time you got a diagnosis? They don't really tell you that.

SPEAKER_05

5:23

They really don't, they really don't tell you because that is true. Uh because most but many of us don't know that we have the disease, even though we struggle with early symptoms. You know, for me, it was driving on the wrong side of the road every once in a while. But of course, when I got alarmed by it, people say, Oh, don't worry, we do that too. Except I hadn't done it before, and then it happened a couple of times, and then there were other symptoms we uh started developing. So it's really hard to know sometimes when you know to get help.

A Voice Against Hopeless Narratives

SPEAKER_02

6:06

I want to talk about you wrote you you talk about the nothingness place. I I have to tell you that when I read that, it made me want to cry because I thought about my mom, because I always would think about how scared she must have been with that and not knowing where she was or what was happening. Can you describe that? Because I just think it's very powerful.

SPEAKER_05

6:31

So I uh yes, and I want to mention that you know, there is the saying that if you know one person with dementia, you know one person with dementia, that it is different for everybody. And uh I often get what you from people uh who see my show who have had a relative with the disease, say that they now think they they may sense a little bit about what their loved one had been going through. I don't know that, but I will talk about it because who knows?

SPEAKER_03

7:06

Right.

SPEAKER_05

7:07

The the what was happening to me is I would be often sitting down or someplace wanting to remember something.

SPEAKER_04

7:18

And I would exit this world.

SPEAKER_05

7:24

I would all of a sudden be tumbling through infinite deep space, looking for that word or that idea or that thought, and hoping that I would get to the other side because that's where the answer was going to be. And it was so real and trying to wake up. I don't have any sense of how long that moment was. Um I sometimes think it was just a nanosecond, it was just an instant. Felt to me like forever, but it could have just been uh Susan never mentioned that she noticed me in a trance or anything. Um, so I don't know. Um I like to tell the story. I was being I was going to my doctor's examinations, and we were at a neurologist's office, and he happened to have had, it was in the hospital memory center, and he had a um intern, but uh uh doing the neurology intern in the office. And the neurology intern says, Well Sam, is that a hallucination or was it real? And of course I hadn't since it was real, I was real. Oh, of course I wasn't floating. But it was so real to me that when I was asked the question, then I answered, yes, it was real. No, the the experience was real, but not I really wasn't floating. The experience of having the hallucination was real. Uh but uh and it would be increasingly frequent. Medicine has put it off. I occasionally feel like I'm at the uh edge of the abyss, ready for it, but it it's it's much abated um thanks to medicine.

SPEAKER_02

9:26

You talked about that, about your process with um the doctors. My mom refused to get, I tried to get her to to be diagnosed. She she would not go. I I I didn't get her, she didn't get diagnosed until it was my dad and I had to take her to the emergency room because she didn't know who I was or my dad was. But can you talk about that a little bit? Because I understand, based on not just my mom, but my dad has had some um medical issues, how frustrating that was for you. Uh, that whole process of what you went through. Because it took quite a long time, even for your first because first you were diagnosed with the mild cognitive.

SPEAKER_05

10:07

Um well, but even before that, right? I would complain to my interns about my memory. In fact, I will say something that's exact times, but I'll even go back further. Well, first of all, people should know, it's important to know, which I didn't realize. I have a genetic risk. Okay. I have uh one instance of the APOE4 gene, which increases your risk of Alzheimer's of 20 to 30 percent.

SPEAKER_03

10:39

Okay.

The Nothingness Place Experience

SPEAKER_05

10:40

Uh and there's a some study out if you have two from each side of your family, used to be considered to have Alzheimer's, but I didn't realize that. But I was experiencing some memory issues in the early 2000s, maybe 2009 or 10. That's a long time ago.

SPEAKER_03

10:59

Yeah.

SPEAKER_05

11:00

And I was had an annual physical, and I still remember, look what I did. I remember buttoning up my shirt at the end of the physical, saying, Hey, Doctor, I'm just wondering, I'm having uh, I think I may have a memory issue. I'm forgetting things. He says, Oh Sam, I know you. Now, if you couldn't remember what you had for breakfast, then I'd be worried about you. Breakfast. And I couldn't remember back then, but what he did, because I was still working every day and was being very successful in things. He sent me to a psychologist who presumed that I was under too much stress from my running a 50-person business and a lot of stuff. And he gave me an antidepressant or an anti-anxiety medicine. I think I probably could have been diagnosed as amyloid positive back then. That was a that was 20 years ago, but you didn't know.

SPEAKER_03

12:09

Right.

SPEAKER_05

12:10

Um and the the symptoms became uh more acute. And uh when I complained to my then in uh 2018 2018 or or so to my internist.

SPEAKER_04

12:28

Uh he said, Oh Sam, I um oh wait, wait, let me get it right down.

SPEAKER_05

12:37

Uh oh, oh Sam, you're just an over-educated man overreacting to normal aging. Then I told him about this experience of floating and internothingness, and that's when he scheduled me for an appointment with my first neurologist. But it took, I mean, and and when I perform and when we had these discussions with audiences, this is not unusual. So many people like shake their head. Yeah, yeah, normal aging. That's what they're telling me, normal aging. Just get used to it. And because I didn't have anybody in my family that I knew of with a history of Alzheimer's or uh cognitive disorder, um, it was presumed to be just normal aging.

SPEAKER_02

13:27

I I love the example you have in your book about the difference between not finding your keys for an unimpaired person like your wife, and for you is that like for me or for or for Susan, we can retrace our stops to find the keys, but for you, you don't have a place to start at all.

SPEAKER_05

13:46

And that that's yeah, I want to say hello to Susan, my wife, and 59 years, seven months and 10 days. Very good. Um and now known as my cognitive now. But she did the research and heard that and brought that to the so I don't know if you want to just mention that. Yes, I was not finding being able to retrace our steps.

SPEAKER_00

14:09

But yeah, that was but that was when you perform somewhere and someone asked that question. How can you tell the difference in the audience? And there was a nurse there who gave that as the answer, and she said, This is how you can tell if it's something that is really serious or is a part of aging. And she said, if you can retrace or you can go back and remember these things, then it's part of how you're aging. Whereas when he went to look for the keys, he had no idea. And so what we had to do is develop a system, and there is uh a place in our kitchen that when he comes in, that he can place his keys and his wallet and have that sense to know that that's where he goes to pick them up.

SPEAKER_05

15:13

So it's helpful to have a single place, singular place to do that stuff.

SPEAKER_02

15:18

Uh Susan, did you notice the changes in him before he did, or did he bring did he come to you with his concerns?

SPEAKER_00

15:28

He came to me. Okay. And uh and then it is interesting. Uh he will tell you the story. I don't know if it's in the book about that. He had another play that he was doing, and it was during COVID. And he at that point he had asked me, would you sit here with with a script?

SPEAKER_05

15:52

And we're in our basement doing zoos.

Why Diagnosis Takes So Long

SPEAKER_00

15:54

Okay. And I and I really I didn't know exactly why, but then as I saw him perform, and then I got to a part in the middle that he just skipped over because he didn't have the script. I had the script. And then I had to say, go back to this.

SPEAKER_05

16:16

So I had been performing that play. It's about Susan, by the way, had advanced breast cancer, and the doctor said she wasn't going to survive, she did. Uh, but I I had been performing memorized for like eight, nine years, and all of a sudden I was having a hard time remembering the lot. And uh that was uh again an early symptom. Um and it you know, it's if you do something and then people can't memorize it was sort of radical to us. It was just you know, sort of a shock. We done it so often. Uh but it again, there were there were other little things that we didn't uh talk about quite so much. But uh, like yeah, somebody would wave at me at a store who and I would wave back, but I have no idea I didn't recognize them either. There's remembering the name, but not even knowing the face anymore. That was another scary thing that happened.

SPEAKER_02

17:20

Well, I know with my mom, her and I used to go shopping all the time, you know. And the last time we went shopping, uh, usually like she'd go in one section, I'd go in another section, and then you know, we'd meet. But all of a sudden I turned around and she was like right next to me. And I realized later on she probably got disorientated or got scared and didn't know where she was, and then she found me. And and so she stayed right close to me because she didn't know uh, you know, where where she was with that that would not surprise me.

SPEAKER_05

17:52

It uh it's hard to often put these things into words as well, particularly. You know, I know even now I suspect people say, oh, he doesn't have I get that so much. They just don't know what's going on back here.

SPEAKER_03

18:07

Exactly.

SPEAKER_05

18:08

It is so different, and so it can be scary. That's why you know I don't travel alone anymore. We don't leave, we don't go too many places alone anymore. Um, because it's for me, it's also reassuring. Um but it is easy to get confused.

SPEAKER_02

18:33

You talk about that you want to start a movement to change how the world sees people with dementia. Can you talk about that?

SPEAKER_05

18:44

Well, um in so many different ways, um we want to move from end stage um also, um, and to realize I can still be out there, we can still be in the airport together, I can still go, you know, get to the grocery store if I want to. So knowing that we're out we're present, we can still function the doctor's statement five to ten years, you know, it's different for every everybody, it depends on when you've been diagnosed and uh the like. And there are so many of us out there. I want you know, there is this movement, particularly in travel, to have uh the equivalent of ramps. So maybe the better way to make this conversation under the ADA Americans with Disabilities Act, we see all big businesses or larger businesses have ramps. Um they often uh somebody should have even smaller desks for people who are uh with um wheelchairs, wheelchairs, the elevators, most all have these um dots and stuff for those who can do whatever that's called. I forget.

SPEAKER_02

20:10

Oh, for uh the braille for if you're blind, braille, but okay.

SPEAKER_05

20:15

There is nothing for somebody with a cognitive disorder. Yeah, you're right. In the airports in Europe, I'm gonna show you this is a lanyard.

SPEAKER_01

20:27

Uh-huh.

SPEAKER_05

20:29

Uh and the front says hidden disability. Uh in Europe, airports almost all airports have a desk with the yellow uh sunflowers. The people need help, they can go to the desk. I am an advocate and uh also a troublemaker, but we can talk about that. But I want the ADA to apply. They see we can't imagine that people who with a cognitive disorder can be out on their own. I can be. If need be, I could walk to our grocery store, I could take a be put in a cab or get in a cab or case like, or I can still early enough to, you know, I can still drive myself there. Um, but I can get confused. Right. I can go slower. I'm slower than other people and getting going through the groceries. What if there in every grocery store was a line that were for that had the yellow uh sunflowers? So people with a cognitive disorder would know to do that. Other people know that that line might be straight. And you know, there are stories that people get angry because somebody who is slow and usually from a cognitive, usually cognitively challenged, and they get angry.

SPEAKER_03

21:58

Yes.

Early Signs And Home Systems

SPEAKER_05

21:59

Um And so structuring it as an integral part of doing business. And in every store, I have a desk with the yellow flowers on top of it, not big, and somebody trained.

SPEAKER_02

22:17

Definitely. Yet you talk about that cognitive navigators.

SPEAKER_05

22:24

Yeah, no, it's my that is Susan is my that's catching on, by the way. We have seen that being used now, uh, apart from us, that uh people refer to cognitive navigation.

SPEAKER_02

22:38

I I think it's a wonderful idea because people don't understand, like you said, it's a hidden disability or hidden illness, I should say, because people look and they're like, oh, you look fine.

SPEAKER_05

22:50

They don't understand it's the brain, you know, that that and that there are early stages.

SPEAKER_02

22:56

Yes.

SPEAKER_05

22:57

We see again the word I want to change. There is a movement to change, uh get rid of the word dementia. Yes. Uh we don't use the word uh retarded anymore in our common medical languages. Uh and we should I have a cognitive disorder, cognitive disability, but a cognitive disorder.

SPEAKER_03

23:21

Yes.

SPEAKER_05

23:22

And I'm early stage, so I can do things that everybody else can do up to a point. You know, uh, and we keep developing new stories, but let me just be try to be quick because I think this may be a good one. Um we get some both Susan and I get a medicine now that requires an injection two weeks. Uh some new medicines. And I get one for my uh glycerides, and it comes, it's delivered, it's in ice, it has to be put in the refrigerator. One day it comes, they drop it off, I bring it into the house, I'm opening it up. I take the box out, put it down as I put you with stuff. Susan's about to leave the house. But then I look down to pick it up and it disappeared. It wasn't there anymore. And and I look around, you know, I do, I look around the kitchen, it's gone. I she's already at the car, and I run out to her. Susan, get in here, help me. My medicine's disappeared.

SPEAKER_04

24:28

And you gave it to me, and I put it in the refrigerator. But I didn't remember in real time.

SPEAKER_03

24:36

Right.

SPEAKER_05

24:36

This is how it's different for you know, people just don't these little little big things can happen. Um, and it is learning how to, you know, but and the goal is not to, you know, put us in a memory unit right away.

SPEAKER_03

24:55

Right.

SPEAKER_05

24:55

Not to, in fact, the data, there is just something in the this morning's newspapers, a study in Europe, Europe that shows that people who are out and about and exercise and read will have better cognitive capacity, even if you have a genetic risk. Uh, we need to be able to get out and move and be present and do things. And the world, just as we have for wheelchairs, needs to be designed to enable that.

SPEAKER_02

25:32

I I would definitely agree with that. What how do you feel about the advice? Because I I it took me a while to learn, but with my mom, I would enter her world that helped where she wasn't so agitated. So, do you think that that is good, or do you feel like you know, some people want to like shock the person with the cognitive uh disease, you know, no, this is the reality, this is today's date, or whatever. How do you feel about that?

SPEAKER_05

26:00

Okay, yes, yes, you're you're at our special challenge point. Okay, it is it's called the yes and it's like an it's an improv. So I was blessed, really. It's just it's like things happen for a cause, but you don't know them. I happen in an unlikely way to end up doing theatrical improv.

SPEAKER_03

26:24

Okay.

Designing Help For Hidden Disability

SPEAKER_05

26:24

It's a hobby. I was professionally trained though by some of the best improvisers in the country. Um give credit to the late Gary Austin, but um in just learning how to live a life of yes and in, accept all information given and then add to it in this world of cognitive impairment in dealing with somebody with that. What you just described is the issue for so many people. You cannot correct us, right? Yes and you can't say, you're wrong, this is how it is. Don't you see? Well, if they saw they wouldn't see this other world, right? Uh, but it the temptation, and Susan is, you know, it's you know, Susan is by nature. Remember, we've been married a long time. It's by nature a no first. You know, it takes her a minute to, you know, just to style, you know, and she's a no, no, let's do this and that. So it's a form of yes ending, but for her it's a no first, you know, not how she reacts. But it's you know, if I it hadn't happened quite yet, but you know, again, it it happened with that thing I forgot that I'd given it to her. But if all of a sudden I wake up and uh saying it's time to go to church or the Jewish synagogue, and it's Wednesday at three and not Friday night, she's gonna she can say no, and that might be all right. Or she could say, Well, yeah, we got to get there on time. Today's Wednesday, you remember how do we and then maybe that'll help? Or a form of how do you yes, and a more dramatic example of that, because we hear it now. We've been in this space for a while, hear a lot of stories about people with advanced dementia in a home, a private house, realize thinking they're not home. So they say, you know, uh, they'll tell their significant other caregiver, just go home. I need to go home now. To say to them, no, you're not, you're home, won't help.

SPEAKER_02

28:51

No, it doesn't.

SPEAKER_05

28:53

Yeah, saying yes, okay, no, first you got to get dressed, okay, we're gonna go. Depends on the situation. We've seen examples of somebody who um walked out, side to the front, walks back in. Sometimes they have to walk around the block, sometimes they get in the car and draw around the block and come home. Yeah, it doesn't people haven't experienced to live with this. That may not may sound silly, but it were you yes, ending usually can resolve most things, not always. Uh there's a a woman you may know, T Passnow. Do you know of TPA Snow? Uh no. Two Snow is there's a lot of training in this field for people who work in this field, and her primary focus is teaching the yes anding of care. Um in one of her videos we saw is a perfect example. She she puts herself in a um conference room or a small uh conference room of a senior living, and a woman walks in and she says, This person has been a maid before. The woman walks in with a brush and whacks the bottom of chairs, you know, and she and it happened in real time. And you can say, Stop it, or what Tipa did said, Oh wow, you're terrific job cleaning. This is the last chair, and she finishes. Good job, you've cleaned all these chairs now. Let's go have lunch. It's the difference between no stop it and accepting the moment that this woman person thinks they're cleaning up because they uh you know, there's another uh help me uh kind of senior care living. It's the Montessori for senior living, where they're applying the Montessori techniques to memory care.

SPEAKER_03

31:00

Okay.

SPEAKER_05

31:01

Now, Montessori, as I understand it, in education for young people, is they see people, young people's natural talents and try to use them to help educate them. They're they're athletic or if they they're good at numbers for in Montessori for senior care, they they learn the person's history. And I performed at one of these senior living places once, and they said, if you come to our memory care, we'll make you, we'll put you in charge of the theatrical.

SPEAKER_02

31:31

Well, it it it it's funny because with my mom, if when because we had to put her in memory care, her it she was already by the time she quote unquote got diagnosed, she was in moderate to severe. Um if they came and they said, Hey, Pam, do you want to play bingo? She'd say no. But if they came in and they said, Pam, we really need your help. Can you help us set this up? She would be right there. Sure, I'll come help you. Because she that was her nature and that uh that worked for it.

unknown

32:03

Perfect.

SPEAKER_02

32:04

Yeah. Yeah. Instead of fighting with her, yeah. That's what she and then she loved it because she felt like she was helping for it.

Yes And Communication In Care

SPEAKER_00

32:12

Communication is the hardest thing with this disease. I think um, and you know, as much as you think you're listening, or you can do this, or you can do that, if it comes at the wrong time, you as the person that is the the care person is exhausted or something happens. This is when you hear these kinds of things happen the most, you know, that you just want to stop it and why can't he understand this, that, and the other? And I seem to call a lot of things it. Do you see it? And now I am learning, but he told me I don't know what the word it means. Can you describe it? So we're still at a stage where he can tell me, which is wonderful. Yes, but I I didn't know that. I just talked like I normally talk, and so I think that's something that we have we as care people have to think about. Is there another way to say it? And I don't know if you had that experience also.

SPEAKER_02

33:29

I didn't, you know, I realized my mom didn't know what certain words were or them, and I would try to get her to try to explain it to me or like try to figure it out. And then at certain points I just went with her. If, you know, if she said this was blue and I'm and it was, you know, remember, oh yeah, it's blue, you know, like because at a certain point after a while I was like, I'm gonna want to argue with her, why aggravate her, you know, because quite frankly, five minutes later she wasn't gonna remember what she did anyway. So, you know, it did teach me to be in that present moment with her. It took a while before I could understand them, but then it helped because I ended up being that person when she got really, really agitated or upset that she would like grab them by the hand and be like, please don't leave me, please help me, you know, and and then and then a woman um with it. But it does take a long time to figure out that communication. So then that you're you're giving you giving that person that dignity that they need and also understanding and not agitating them and begin to understand what it is. It's a very complicated disease. It really is.

SPEAKER_01

34:37

Yes.

SPEAKER_02

34:38

Yes. You um also talk about anticipatory grief or dealing with loss and bad news. What would you say to somebody who is, you know, possibly getting these these diagnoses? What would you say to them?

SPEAKER_05

34:52

Well, anticipatory grief came up in my because I in my book I talk about uh for a bit about our earlier my first our first round. And I it sounds odd, but we've been gifted, if you wanted to use that word. In retrospect, it is I mean, it's certainly helpful now. But having gone through Susan's breast cancer, and I was having to anticipate her passing. And um I use the word mainly in the in that regard, and how to understanding what that is, and I walked up to the abyss. I mean, you know, she was supposed to die and got close now. Um in this disease, I don't know because we're on different sides of it, whether there's but there is something formally known as anticipatory. It is getting ready to lose someone you love or lose anything that you love, uh, but to lose your partner. You know, and then it what's complicated in this disease is and I and I appreciate this, and this is not small. Um Susan Susan Susan was always Susan. When Susan was going through her illness as her caregiver, she was a woman I always loved, I met, and uh I wanted to be there and I wanted to help her the best I could. I'm becoming someone else. Yeah, she's losing me before I actually die in some ways. Yeah, that complicates the role of the care person. And there are I I haven't seen too many of them, but I'm sure there are stories of people who just can't do it. Uh I I remember now the story I have about this quick, but we were at a funeral where um someone's husband passed away after having dementia all the time.

SPEAKER_04

37:11

And they were friends and we had known both of them. And we were in the room and we o I overheard the wife tell a friend, you know, he wanted to live so badly.

Anticipatory Grief And Ethical Strain

SPEAKER_05

37:25

He he tried to scoot out of the house on his bottom to go outside. And then she said, I'm so glad he's dead. And it was such a heartbreaking thing to listen to, but I understood it. Um and I think for people to hear that that happens, that does happen. And and so I was a care partner for Susan with a terminal diagnosis, and she was always Susan. She was always a woman I married and loved. I may become someone entirely different. And yet, and that's true for many people, or my you know, you don't choose your parents, but even so, um the temptation to leave to exit and to be free of that, and certainly in marital circumstances where there is no legal obligation. Yeah, there are you know there are ethical issues here too. And um, I believe the requirement is to make sure your parent or your spouse is cared for. It may be necessary to not be in the room all the time or to live together.

SPEAKER_02

38:45

It is it it it is difficult uh when you do you you you lose them twice because like I said, my mom didn't know who I was. She just thought I was this really nice girl that came to visit her. So I mean it it it hurt, but after a while, you know, I I don't say I got used to it, but it didn't bother me as much, you know, for it. So I did lose her that way first, even though physically she was there, you know. And then you lose it again when she, you know, when they actually done it. So the the part is hard, but I do appreciate the fact that I did learn from her to be in that moment with her, because at least I got to experience that with her uh for it, because I I do think that this disease teaches you to be right in that moment because that's the only moment that you have with it.

SPEAKER_05

39:36

Yes. And it's not, and I just want to acknowledge I I know it's not easy. Um therefore, and you know, we're still at that phase, by the way, where we we work hard and not going into the ditch. I don't know if that's the right way to say it. Um we talk about it a lot. Um it is so easy to feel feel sorry, to get sad, to um give up in some ways. You know, some of the worst things we could do is just sit in front of a TV and watch and don't get out there or don't work anything. Or, you know, doing my play. The work around making it happen is not small.

SPEAKER_02

40:23

No, not at all. And you're on you're on the East Coast, right, for your play?

SPEAKER_05

40:28

Yeah, yes. But we've been to San Francisco and uh LA and Okay Um Colorado. Um but so um I'm sort of lost my the point I was going about. Lost my train of thought.

SPEAKER_03

40:53

Oh that's okay. That's okay.

SPEAKER_05

40:56

Oh, but then we talk about it. So we we have to be conscious and aware about how we're gonna ha do well and be very specific. How are we gonna be happy? How are we gonna what can we do to make you know we're we're blessed that we have two adult children and they they support us and we have grandchildren and they're all there. We're not isolated from them, and uh so so we we're blessed with all that, but it it is easy to to close in, and that's why we have to oh and you know uh you know um it's very important not to be isolated, and we're gonna be moving into a senior loving place uh just about a year from now because they're building it.

SPEAKER_03

41:51

Oh, okay.

SPEAKER_05

41:52

Um but in part, even us who be very involved in our community, and we have a son who is a politician and he's well known, he's in the Virginia State Legislature. Okay, but and we're feeling nice. And um because there is, I don't know if you saw it too, but there is a sense that people tend not to want to be around it.

unknown

42:20

Yeah.

SPEAKER_05

42:21

Around them. And they're you know, we I would perform someplace at a senior living uh looking at Susan because she I think she'll remember it, where a couple came up to us and said, you know, we've my husband has dementia now. We we just joined, but he's really, but nobody wants to sit with us anymore.

SPEAKER_02

42:42

I I yeah, I think because people don't understand it and they get scared of it and they don't realize that the person's still in there. You know, it might be communicated differently, but they're still there.

SPEAKER_05

42:53

So and and they have gifts to offer us.

SPEAKER_02

42:56

Yes.

SPEAKER_05

42:57

Their mere presence uh is helpful, but it is an interesting we're learning, we're learning as we live it.

Book, Play, Resources, Closing

SPEAKER_02

43:04

Yes, definitely. Well, thank you so much for joining us today. So you have your website is dementiaman.com, correct? So people could see where your play is, they can get your book off of Amazon. It's it's very good read. So if you have had anybody that has had this disease or is going through it, it's definitely gives you that perspective for it.

SPEAKER_05

43:26

Breaking news, breaking news.

SPEAKER_02

43:29

Yes.

SPEAKER_05

43:30

I'm beginning to, and we'll have it happen later this month. We're now I was reluctant to do it before, but we'll do a performance over Zoom of the play.

SPEAKER_03

43:40

Okay.

SPEAKER_05

43:54

There are people who argue life with this disease is not worth living in. There is an option to go to switzerland and stuff like that. And I don't want that. I don't want people who are not in a in a group who with somebody to help them with it. But well we will offer it over Zoom now. So you don't have to fly us out.

SPEAKER_02

44:16

Okay. Uh that's on the website dementiman.com. You also have a lot of wonderful resources in this book as well too. So so thank you so much for joining us. This has been so enlightening. Very informative.

SPEAKER_01

44:29

Thank you, Patty.

SPEAKER_02

44:31

Thank you. So I hope you've all enjoyed this. Hope you enjoyed your cup of coffee, your cup of tea, or your glass of wine and just know that you're not alone. Leave us a review, subscribe to our YouTube channel, and enjoy it please come again and enjoy another episode of Patty's Place.