1. Living with Dignity: Dementia Advocate Mary Beth Wighton on Capturing Essence and Improving Healthcare

Join our discussion with Mary Beth Wighton, inspiring international dementia advocate, writer and speaker as we talk about what it's like living with a diagnosis of probable Frontal Temporal Dementia and learn how she captures her essence.  

Our conversation covers:

• what receiving the diagnosis is like and the importance of bedside manner;
• coming to terms with a diagnosis not just for herself but for family; 
• choosing to live with purpose and the role of being an advocate;
• creating culture and policy change through community;
• speaking up for our own needs and being a part of our own health care team;
• the importance of positive energy and connection;
• communicating our wishes with family and your most trusted supports;  
• why words matter (Caregiver vs. Care Partner)

**Note:  This episode was recorded in the fall of 2022.

Links mentioned:

• Mary Beth's book:  Dignity & Dementia:  Carpe Diem:  My journals of living with dementia 
• Murray Alzheimer Research and Education Program (MAREP)
• Canadian Dementia Strategy

Thank you for listening!

Do you have a question or a topic related to "capturing essence for care" that you would like discussed on the podcast?  

Email:  awestruckaspirations@gmail.com

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Intro and outro music with thanks:  Upbeat and Sweet No Strings by Musictown 

Lisa brings over 25 years of experience working in healthcare settings with older adults. The perspectives shared on this podcast are her own and do not represent the views of any past or current employer. Patient/resident stories are shared only with explicit permission or as anonymized composites for educational purposes.

Transcript

SPEAKER_02 0:04

Welcome to Capturing Essence for Care, where we discuss the importance of incorporating personal life stories into healthcare and share ideas to help you on your journey. I'm your host, Lisa Jaworski.

Lisa 0:19

Today I'm really excited to have Mary Beth Whiteon with us, and she brings a whole new and fresh perspective to this subject. We have a great detail of stories and information to share with you, and it's going to come out very authentically because, well, it is authentic. It's very original and it's coming from somebody with lived experience. So on that note, I'd love, Mary Beth, if you would share a little bit more about yourself and just thank you so much for joining me today to do this.

SPEAKER_06 0:53

Thank you for having me today, Lisa. I'm quite excited to uh be part of this uh this podcast. So thank you for having me here today.

Lisa 1:01

It's a privilege for sure. And uh you and I have had some conversations already. So I'm really excited for you to share your own experiences with our audience. And so I'd love if we could just start with if you don't mind sharing a little bit about yourself and and your journey thus far.

SPEAKER_06 1:18

So my name is, as you said, Mary Beth Wayton, 55 years old, and I'm living with a diagnosis of probable frontemporal dementia. I received that diagnosis about 10 years ago. And um since that time, my partner Don and I have been extremely busy acting as advocates for people living with dementia, um, really from a local to right up into an international level. And uh we have a daughter, Brianna, who's 28 years old, and we're doing the intergenerational living for the first time a few weeks ago. And so that means we get to have our grandson with us uh some of the time too. And uh I'm really uh lucky. I uh I have a large base of family and friends in Sarnia, where we moved to a few weeks ago, who are really looking to support me to live the best life I can.

Lisa 2:18

Wow. That's incredible. I love the fact that you mention your family, and we might hear them now and then in the background, which I think is very heartwarming. It's it's nice to have family around, I'm sure. And and the fact that, you know, just you mentioning your advocacy roles at at all levels is remarkable. And I you mentioned that your diagnosis is was 10 years ago. And I love the fact that you mentioned living well. And I wonder if those two things go together. Do you think they're related at all? The fact that you're an advocate and at this point in your life, like is that something that keeps you going, I guess?

SPEAKER_06 2:58

You know, I think if it wasn't for advocacy, right off the hop, I would have had my family and I would have had a very different pathway. And I don't think it would be as engaging, I don't think it would have been uh supporting or loving. Um, but we were fortunately introduced to advocacy through an Ontario University through May Rep. Um, so Murray Alzheimer's Research and Education Program out of uh University of Waterloo. And I had probably had only been diagnosed uh two months, and um we met with them and they started sharing about lived experience that we were the experts, and I had been for years told that I wasn't an expert, and my opinion basically didn't matter, and I really didn't know anything about dementia, and I shouldn't be sharing my knowledge with anybody, and so it was so it was like this breath of fresh air that came through and said, you don't have to live like that. There is another way to live life, and first of all, you have to recognize that you truly are the expert. And that and that gave me power, yeah. You know, that moved me from a victim state into a person who, you know, government, government now asked me how what's the best way to, you know, roll out this policy? What should policy have?

SPEAKER_03 4:29

Right.

SPEAKER_06 4:30

And that never would have happened if I hadn't really um embraced the advocacy work, I think. So it's it it totally changed my life, changed my trajectory. I think makes me stronger, makes me feel better. And as we all know, mental health is so important for anyone, you know, and I just like many other people, I just have a disease. So the better I can feel, then that's a good thing.

Lisa 4:55

And that the the fact that your voice matters and is being heard, yeah, you know, and valued. Like the information you have to share when you're the one living it and going through something like this, this is who we should be listening to. You know, it's it's people such as yourself, not people who think they know and people who have worked, even if it's been years and years. There's no no replacement for somebody who's actually going through something day in and day out, uh at least in my opinion. Um, and the fact that we're all very different, so I don't think we can hear enough from people living it, you know, living with it.

SPEAKER_06 5:34

Well, thank you. And I think I think really just even the beginning of this podcast, Lisa, this is this is where people who are like-minded starting to really gel together and say, we can do this differently. And so you're you're one of those individuals who said have said, even though you have all this experience and great training and all of those other things, but it's working with people, and that's the big trick, right? And so it's getting really it's a culture change if you think about it. We've come from where the white coats and the doctors, and you would never say anything against the doctor or question that doctor. Well, guess what? I've I've fired my doctor, you know, but it's really has happened, I would say I've seen it over 10 years. And so it's a it's a great thing to watch kind of from the sidelines and to be in it as well.

Lisa 6:35

Some really good points. And the fact that you're in charge, it's your health care when you know, when it comes to the way you're being treated and the things that you need, it needs to be your own voice. And I think that's the part that I feel so strongly is missing, not intentionally, but I think we we use terms like person-centered care and think that by you know saying the right things or doing the right things that we're following best practice for person-centered care. And I I think it's always important to see it from a more personal level where there's not one cookie-cutter answer. We have to really modify and adapt to each individual and figure out what's important to that person. We all have different um choices to make and you know, the the trajectory, as you said, on how we see our lives going. So to be empowered to have, I guess, a part in that and truly be part of the the care team when we're working with individuals who have any level, any cognitive ability is is so important.

SPEAKER_06 7:43

It's essential, which it is essential. And you know, and I think the other thing too that is had you know has changed in time from my experience. Initially, it was uh doctors really didn't want to, you know, talk with her. That too has changed. I think I think I really think and believe that there's been a push all around, not just for dementia, but truly for the lived experience. Yes. And that in turn has helped uh dementia, yeah, the dementia advocates. You know, when I when Don and I first started, like there weren't, there weren't any. Like we, you know, there was uh in Canada, there was Jim Mann, who's from British Columbia. There was a few people that I was really fortunate to hook up to from the University of Waterloo team. So they were people with dementia, and then it was into an international advocacy level, and so it, you know, it's just that had to happen to then be able to put pressure on the people who were helping us or trying to help us. And you know, you you kind of nailed it, which is uh, you know, when you meet a person with dementia, you've met one person with dementia. That's right, yeah. And uh if we if we go about working with people with dementia with that in mind, yeah, then the relationship that that will develop is is you know, that's your authentic relationship, right?

SPEAKER_03 9:23

Yeah, yeah.

Lisa 9:25

Yeah, absolutely. I I want to point out because I'm so focused on trying to help to, as I call it, capture the essence of individuals, like helping us understand what's important to each of us as as we get older and main may require healthcare at some point, which many of us will. Uh I I want to acknowledge and recognize the fact that you wrote a book called Dignity and Dementia.

SPEAKER_06 9:52

I did.

Lisa 9:53

And so I I wanted to just say that I've only read the very beginning of it, the first few pages, and I'm so intrigued and want to dive right in. Uh, and you mentioned actually, I think it's on page seven. I highlighted it because I thought it would, it just it captures, I think, a little bit of you where it says, I have accepted my diagnosis. It is the helping of others to aid in their acceptance of my diagnosis that is paramount. And I thought, wow, you know, we we've we've talked about how important acceptance is, and I guess I want to ask a little bit more about that piece and how that fits in. Where along your journey did you accept the diagnosis? It sounds like you were looking for something that helped you feel validated and like you had something to then go forward and in getting the care you needed, but where does that connect with also then being connected with Merip and doing the advocacy work? Which came first, would you say? The acceptance piece or being connected with Merip?

SPEAKER_06 10:59

Um, the acceptance piece. And so what happened, I think, to help that acceptance is I had been sick for about two years with a, and I would say a typical pathway, which was I had uh severe depression.

SPEAKER_03 11:17

Okay.

SPEAKER_06 11:18

And uh if you read into frontemporal dementia, that's a very normal thing to for a person to go through. And I was a very highly successful individual with a you know career. I've traveled the world, and so it was a really, you know, kind of kick to myself as a person where I just I couldn't get out of the muck. I just couldn't see it, it was too dark, and and you know, my family was looking at me, what's going on, you know, that where's our where's our Mary Beth? That's what Don used to say. Where's our Mary Beth? And so at that point where we had struggled through, um, and it was mandatory, by the way, for me to see every every kind of doctor that you can think of. And that was based on the healthcare the um of uh healthcare company, and so you know they we we actually had a doctor. I'm gonna diverse here for a minute, but we actually had a you know a doctor that would say to us, you guys have marital problems, Mary Beth just making this all up, it's in her head, she's pretending she's sick, she can remember things. Oh, yeah, like so on it. So what I learned, what we learned from all of that was make sure you get the doctor's notes. But what that led us into then was we realized what it wasn't, you know. So as we went through these doctors, we know it's not this, even though they might say it is. We went, Don and I really got together and said, no, that's wrong.

SPEAKER_00 12:57

Right.

SPEAKER_06 12:57

We need to go see another doctor. And when we were when I was diagnosed, and the doctor said, You have probable front temporal dementia, you can no longer drive effective immediately, you will be a burden to your partner. And um, she looked at Dawn and said, You need to take Mary Boss credit cards away from her right now because she will spend money that you don't have, and you will, like many people, will go into financial ruin. And you know, this is a time where you need to go home and get your affairs in order.

Lisa 13:35

Wow. That that's the way the news was broken.

SPEAKER_06 13:39

That was it. So I got two Ammies. One, I've been driving since I was 16. I was the driver of the family, like you know, that was my typical spot, and then the second was the disease part of dementia, but I was so lost in the I have to I can't drive anymore, yeah, that I didn't even really take into account the other half of it, which is you have dementia, and we didn't even know what that meant. So, Dawn, you know, being the sweet partner she is, she's like, awesome, there must be a pill for this. What are we gonna take? And I'm still thinking, oh my god, I don't have my driver's license, but she went into immediate good, we can we fix it, right? We had no idea, and so um we drove home that night. I had handed Don my keys, and uh we laid on the couch together, and we had a sectional, so we did, you know, head to head, and she cried almost all night. We just cry. And what came out of that though was I realized quickly, I learned a lot, first of all. I I started to do queries, and it was like, oh my god, you know, all they talk about is end of life. There was no living, there was no, you know, going back to Merit. There's no you can you can live well with this disease, there was none of it. And so I first had to go through, you have to accept your disease in order to to move, in order to live life, in order to be the best parent I can be, in order to be, you know, um the individual that I still want to be, even though I have dementia. If I accept it, then I can work with it, I can help others work with it, and that's when it became very key, then for others to learn about what this diagnosis meant.

SPEAKER_03 15:39

Right.

SPEAKER_06 15:40

Right? And so by accepting that, I really taught others, I hope, it's okay to talk about dementia. You know, you can ask me, and I encourage you to ask me any question about anything. Well, how many people get that opportunity 10 years ago? Nobody. Yeah, so we're really pushing the edge, right, on what was acceptable. And uh this is then um we met with May Rep, and so they actually came out to our house, and there was there was a booklet that they gave us, and they um the two individuals, Lisa and Jessica, said this book was written by people who have dementia, poor people who have dementia. And I'm like, what?

SPEAKER_05 16:37

Like it was like this. What do you mean people are living well and doing things and know how to think? It was this, it was like the light bulb went on, and it was like the angels were singing, Hallelujah, you know, you have arrived.

SPEAKER_06 16:52

And sure enough, I flipped it over, and there was Brenda Hunum's name, and all the other people's names. And I said, I want to be Brenda Hunum. That's what I want to do, and so it began.

Lisa 17:07

Wow. So uh an inspiration and a little bit of maybe a glimmer of hope on the fact that you can still live well and and have a purpose and give back and contribute is I I would imagine, because I feel this way, it would is so important to our lives at any stage.

SPEAKER_06 17:29

Yeah. When when we feel that people need something from us that we can help, yeah, that's that that's when you start to feel good about yourself. Yeah, yeah.

Lisa 17:40

And the fact that helping, I think often, at least in my work, when people talk about quote unquote dementia care or meaningful activities, I think often we think it's like hands-on activities, things that we're doing, things that need sorting or organizing, which can be great. Absolutely. But I think what's often forgotten is that people can feel helpful just by sharing their experiences, just by being given the opportunity to listen and and engage in conversations which can be maybe most meaningful, you know, more in my opinion. I'm just speaking for myself. So yeah, I I think, at least in my perspective, that would be important to me when I think about the things that really matter to me that I would want people to know about me, is just I would want to be given that opportunity to listen, you know, to really hear somebody else's story and and share my thoughts or be asked for my opinion on something.

SPEAKER_06 18:45

And you and you know what? And and as a person with dementia, as I'm changing, and I am, you know, I've I recognize that. And what matters to me is that those people around me who are trying to keep me engaged will alter their way that they're trying to engage me, right? Because it's not it can't be stagnant, right? We have to be able to modify literally on the minute.

Lisa 19:16

Yeah, that brings me to I I'll quote one more little part in your book, and it's actually not not far away, but it was talking about when it was when you met Sharon, who I think is uh somebody who came to visit you on a regular basis once you got to know her. And you said, unbeknownst to Sharon, I was more interested in the energy she projected than what she used to do for a living. And I like the raw, positive energy she gave off. So I imagine I think that it's more about that. It's more about the energy and the connection than it is about what you're doing. You could play be playing a game, you could be chatting, you could be going for a walk, but as long as there's that connection, that bond, what does that make sense? Does that sound accurate?

SPEAKER_06 20:07

Oh, it's you know, it's absolutely totally accurate. And you can tell when people are, you know, just their energy is quote unquote off. Right? Yes, so absolutely to that, still to this day, I would prefer to sit with someone who wants to just even sit with me versus someone who is so intent on getting me to make the sock match, right? Right, right, versus enjoying my company, yeah. You know, just just being together. My mom had dementia, and actually my dad ended up, but my mom. And the last night that she was with us, um, she wasn't there anymore, like you know, her body was there, but I still felt there was a connection, so she I felt like her soul was still there, and I talked to mom only, you know, there's no response, and you know, and I'm sure probably many people can have gone through that where you're with someone, and I uh reminded her of funny stories, and you know, so I'd be giggling away and be singing songs with to her that we used to really love, and she would play it when she uh was late, late later stage in dementia, she would play the same like video over and over and over and over and over of this music. And so I would play that for her, but it's it's the importance of recognizing that energy that you bring, whether that person is passing away or just maybe not responsive to you.

Lisa 21:58

Yeah, yeah.

SPEAKER_06 22:00

Really important.

Lisa 22:01

The the energy is what we feel, right?

SPEAKER_01 22:04

Yeah.

Lisa 22:05

What are some ways that you can encourage others to capture who they are? Or, you know, in your opinion at this point, and you know, obviously you're able to communicate for yourself, you're able to advocate for yourself and others going through something like this. What would you suggest from your experience on ways that you can help others to really know who you are or what really matters to you in order for you to live your best life at any stage?

SPEAKER_06 22:35

Well, I think it's I think it's important to when we're capturing our own essence to communicate that we take time to understand it. When we talk about the essence, for me, it's really taking a step back. And it's thinking about what I what do I want? What's my life about? What do I want it to be? And how do I remain true to myself to the end till the day I pass away. And I think this is where we have to break from that mold of following the medical diagnosis to the end. I think that can help us in a framework, but I think there's more to it. I think we really have to help people understand and remind them of who they are. That that essence. So for me, you know, the essence is my family. My my family means so much to me. They're at the they're at my heart.

SPEAKER_03 23:47

Yeah.

SPEAKER_06 23:48

You know, my my animals around me. That they're that's that's very important to me because they make me laugh, they bring joy to me, right? And and so could you imagine how different our world would be if animals could go with us wherever we are? Long-term care, hospitals, how different we would be.

Lisa 24:10

Yeah, yeah. Having that sense of comfort and familiarity and therapy and everything.

SPEAKER_06 24:17

The familiarity. So the the other, you know, what what else is of essence is what do I want? What does my end of life look like?

unknown 24:26

Yeah.

SPEAKER_06 24:26

And we are so afraid to talk about that. Right. And when we do talk about it, you know, people kind of move back, and I don't really want to make a you know, make a an opinion on that. Um, you know, Canadians are very private people, and uh, and so it's it's challenging, I think, for people who may not necessarily agree with the medical approach to the procedure of dying, for instance. And I think that's important when you're at my stage. You know, I know what I don't want, and I do know what I do want. And you know, that's been communicated to Don, and it's been written down. And you know, that's what the doctor wanted me to do 10 years ago. I wasn't ready, I'm living, like stop, you know, stop it already. I'll get around to it. You know, we did it immediately because that's what we were told, but right, you know, since then. And so the essence, I think when those things become clear to people, you know, this is this is that personhood, this is who Mary Beth is. She's a historian, she loves history, she loves stories, she loves music, you know. Yeah, when we put all that together, that's my essence.

SPEAKER_03 25:52

Absolutely.

SPEAKER_06 25:52

And it doesn't take long, I don't think, to find it. I think people just have to ask questions.

Lisa 25:59

Yeah, yeah, and give the time to have that dialogue and have those interactions. And maybe the other piece is not feeling judged, like feeling like you have a safe space to share that information, regardless of what you you want to share. It's it's yours, it's yours to own, right? Like what's important to you. And so I I would I think, at least for me, it's so important to feel like I can share information, knowing that I'm in a in an environment where I'm not going to be judged or feel that my response wasn't correct in some way.

SPEAKER_06 26:37

Well, it's true, and um, you know, I my partner is a female, and many times we are judged because you know, maybe the person who is we're talking to doesn't believe that two women should be together. We can feel that. Remember that energy? Yep. Guess what? You don't have to say anything, we feel that energy. Right. I don't know where I was going with that, but I guess it's it's going back to that safety, you know. In particular for the medical community, you know, I totally appreciate that people have their own opinions and they have their own belief systems, but when you come and you're working with an individual, then all of that has to be left at the front door. You have to take on the role that you signed up for and the waivers that you've agreed to and really be that person who's supporting them and not judging them.

Lisa 27:41

Yeah, yeah, yeah. So I guess one of my last questions would be I think you're very good at this. Even at the beginning, you can kind of put it back on me saying, okay, what do you think would be best for the listeners to hear? And so I want to bring that back, but flip it a little bit. If you were, say, um, a healthcare professional working wherever, whether it's hospital or long-term care, whatever it might be, what do you think would help you to get to know the people you're working with?

SPEAKER_00 28:14

That's a good question.

SPEAKER_06 28:16

So, one of the things I learned many, many years ago in my career was I was a shy person. And so it was very difficult for me to, it wasn't very difficult, it was challenging for me to get to know people and kind of put myself out there. And one of the things that typically we do, we say, Oh, where do you work? Right? That's a that's a very normal question. Where do you work? Uh, tell me about your job, how many kids do you have? When in reality, maybe that is not of interest to that person at all. So the question becomes, tell me about yourself. So you, the person, can choose anything you want that's important to you, yeah. To share with me, and that's how I will learn about you.

Lisa 29:13

That's excellent. That's a really good tip for everybody. Tell me about yourself and just leave it there and see what they share.

SPEAKER_06 29:20

And then because it happens, the person will say, Well, what do you want to know? What do you want to share? Right? It's it's like great back, but then it will make the individual go, hmm, what is important about me?

Lisa 29:34

Yeah, good point. I like that. So there, there, yours to use. Love it, love it. I'm gonna write it down. That's so wonderful. You've you shared some great insights. Uh, and I guess the one other thing that I know you would want to mention here is the importance of language and the things that we say and the difference between caregivers and care partners might be part of it. And I just wondered if you wanted to add a little bit more about that.

SPEAKER_06 30:07

Thank you for asking that one too, because that's that's an important one. And we know from all the work that's done through research how words affect people. Right? Well, guess what? It's the same thing. If you call me demented, um, that's an old school word, and uh, it's not a feel-good, it makes me feel because the word demented has such bad connotations to it, it doesn't make me feel good. And 10 years ago, I was being called demented by by doctors, and um we same thing, those may rep girls, I tell you, um, introduced us to the word partner, and in my international advocacy, um, that was also the word that they were using. And the reason for partner is because as soon as you say that you are a giver of something, you have power over me.

Lisa 31:06

There's a receiver, there's a giver and a receiver.

SPEAKER_06 31:10

And I I will always be at the receiving end of it. Well, that sucks.

Lisa 31:15

Yeah, I don't want to be the reason. I you know, it does. Yeah. What about those helping roles and the giving back part, right?

SPEAKER_06 31:23

Right, and so because that giver puts us at a difference in um it's an adult-to-a-child relationship versus partner, which then puts us on the same plateau. And that makes it more powerful, it makes it more um, I feel like I'm uh a contributor, I feel like I'm working with someone for my own care.

SPEAKER_03 31:53

Yes, yeah.

SPEAKER_06 31:54

Rather than taking and taking and taking, you know, that we've we're already told that we're burdens. You know, how do we get out of that mindset? Right? How can we uh so those words are very important in in helping move that forward. And I tried really hard, in fact, with the uh Canadian National Dementia Strategy. Um, I I brought this up as the the importance of words and the difference between a carer, caregiver, and a care partner. And you know, because it's at the policy level. It's what does our government say? So it's not just about you and I, you know, on a podcast somewhere, it's truly we have to make a cultural change and tell and show people why. Yeah, and how it makes people feel, and how it makes people feel, and we have all the research to show us that words matter.

Lisa 32:55

Absolutely they do. And going back to when you were first diagnosed, I can't get over it yet. I truly believe that those situations happen, how news is shared with individuals or patients or whatever you want to say. The fact that all of a sudden, you know, your driver's license is taken over. Some of the safety things may be somewhat understandable, but the language and how we share that information and how you make a person feel through that is completely different. There's there's ways that we can go about that in a very in a more gentle way and a more compassionate way to support individuals, you know, at least that's my thought on it.

SPEAKER_06 33:34

Well, and that's why we fired the that doctor. True story, true story, you know. If if that that comes back going back again to relationships and uh partnerships, if my doctor perceives me to be that detrimental to my family, how can we move forward with that doctor? Yeah, where's where's our sense of hope that you know what? Yes, I have dementia. Okay, we got that part. So what do we do now? How can I live every single day the best day that I can, which is carpetal?

SPEAKER_03 34:10

Yeah, yeah.

SPEAKER_06 34:12

And if you're not ready to share that with me as a doctor, we're gonna keep looking. And we did.

SPEAKER_03 34:19

Good for you.

SPEAKER_06 34:20

We did, and and it makes a difference. It just it simply makes a difference and it gives us the energy and the power, and I don't make a big deal of it. We moved into our new house. Uh, neighbor came over to introduce himself, and I said, hi, you know, did my spiel, and I have dementia. You know, like big deal. So what? I'm still out, you know, playing outside and you know, playing in the back with the hose, and you know, I I'm still living life. So why would I share that? Because I don't want it to be a big deal, right?

SPEAKER_03 34:59

I see.

SPEAKER_06 35:00

Like a hidden secret. Oh, you know, did you hear the new neighbor has dementia? It's like, who cares?

Lisa 35:07

Yeah, I have dementia. So what I think that's a really important piece, too, that you share, you know, that it just to talk about it and uh open up those platforms. Don't be afraid, yeah, yeah.

SPEAKER_06 35:19

And that's why your podcasts are so important, truly, because you know, we kind of get we get to the heart of matters. You know, your question about the capture and the essence of us, it it's a very um, it's a very important question. Makes me think. And and I and I think if we all just took a step back and we all thought about the essence of each other, you know, what does that look like? How do we, you know, forget dementia, how do we support each other? How do we, you know, how do I support you as a friend? How do I support, you know, my daughter?

SPEAKER_03 35:56

Yep.

SPEAKER_06 35:57

Just this gets right down to just being a good person.

SPEAKER_03 36:00

It does, yeah, it does.

SPEAKER_06 36:02

Kind.

SPEAKER_03 36:03

Absolutely. That's that's the core message, isn't it?

SPEAKER_05 36:06

It is always right.

Lisa 36:08

Here's my takeaways, Mary Beth. You tell me if I'm on track and if I forget anything. But from from what we've talked about today, and I so appreciate your time and sharing this with me, I take away the fact that capturing essence means like how how can we do that? Some really quick tips would be to start having conversations, to instead of withdrawing or or not wanting to open up when you think something's wrong, to have those meaningful conversations with people that you trust and people that you know uh will support you through that and not judge.

SPEAKER_00 36:44

Yes.

Lisa 36:45

It also sounds like sharing your story, making the word dementia or you know, your experience something that we talk about and not hide.

unknown 36:56

Yeah. Yeah.

Lisa 36:57

You go. And and I'm gonna say you're you know, also writing things down and and capturing that in ways that make sense or in in easy to understand terms for people who might work with you someday, you know, to be able to and and things like this. So I guess what my point is capturing your essence could be in a book, it could be verbal, it could be in a podcast, it could be written on one piece of paper, it can be in so many different ways that there's not a right way and a wrong way, same as all of us human beings. We're all here and we're all different. And working with one person with dementia is working with one person with dementia. So you nailed it. I think we're all different. There's no right way, no wrong way. We're just trying to make things simpler to to make our journeys more meaningful and enjoyable. Did I miss anything? I, you know, it's it's the person behind the disease.

SPEAKER_03 37:57

Yeah.

Lisa 37:58

And understanding that person or knowing a little bit more makes all the difference. Yeah. Wow. Well, thank you so much, Mary Beth, for your time. Uh, you've yeah, so many little insights and big insights that I think are definitely worth sharing with so many listeners, as many people as can possibly hear this and put it on repeat, you know. Maybe listen a few times and share it with others who might need to hear this as well. Thank you so much for your time, Mary Beth, and for your work in this field.

SPEAKER_06 38:30

And thanks for having me, Lisa.

Lisa 38:32

It's been a pleasure.