Honoring Life's Journey: Embracing Dignity and Renewal in Dementia Care

Imagine the wisdom we could glean from those who've lived the longest among us, if only we learned to listen and support them in their twilight years. That's the heart of this conversation with Mary Anne Oglesby-Sutherly, a dementia doula who brings light and dignity to the dementia journey. Together, we confront the misconceptions of aging, the fears tied to memory loss, and celebrate the adaptability that can still flourish despite the challenges faced by older adults. Drawing from her background in family practice nursing, and inspired by figures like Dr. Lowell Harris and Teepa Snow, we weave a narrative that connects the past to the present in community care.

When it comes to dementia, there's a profound need for understanding and compassion—a need Mary Anne meets daily. This episode peels back the layers of dementia, differentiating it from normal aging and highlighting the role of care partners, those vital companions who journey with individuals facing cognitive challenges. We explore the essence of Veranda Ministries, where a faith-based community offers not just care, but a nurturing haven for growth and connection. 

Wrapping up, we delve into the celebration of life that can still be found in dementia care. We enjoy recounting the joyous Derby Day festivities at Veranda Ministries, where hats, horses, and strawberry drinks create a tapestry of inclusion and engagement. Through these stories, we redefine caregiving as care partnering and underscore the respect due to our elders. Join us for an episode that honors the human experience, from the restless beginnings to the renewed possibilities.

Thank you for listening.

Be sure to visit the Restless to Renewed website for pictures and more information about episode guests at www.RestlesstoRenewed.com.

Transcript

JaniceHost00:22

Welcome to Restless to Renewed Women: Redefining Midlife and Beyond. Today, my guest is Mary Anne Oglesby-Sutherly, and Mary Anne is a dementia doula, something I had never heard of until I spoke with her. And so after talking to her, I am intrigued by her work, and I think you'll enjoy hearing about what she does every day also. So thank you for being here, Mary Anne. How are you?

Mary AnneGuest00:52

I am good and thank you for having me. I was so surprised when I got your invitation because of an email I think you sent me because I didn't know where you lived and I looked. I went well, good grief, she lives in Portland, not far from me, so it was kind of cool. And we had a mutual friend, Missy Buchanan, whom I adore and have known, and that's what's even funnier is that when the veranda started, the program that I have was Missy was my biggest cheerleader. She actually helped me get started and gave me the you can do it, we need it. So she's a wonderful woman and so I was just thrilled. I went back and listened to y'all's podcast and it's an honor to be here.

01:36

And I love what you're doing. It's so cool. I'm not sure I know all about it, but what part I do know it's cool. Basically, you know, we're telling stories.

JaniceHost01:45

We're talking to women from all different backgrounds and I tell people everyone has a story to tell. And one of the things that we talk about in in a couple of the podcasts is that oftentimes, when we get to a certain age, we feel like we're not being seen as much anymore and are recognized and so this is a form for people to go ahead and say, hey, I'm still here, I'm doing these things and I'm pretty vital right now.

Mary AnneGuest02:15

Exactly, and you know what, because of our age, you know, people used to think in older days, my grandparents days, that the older you were, the wiser. That wisdom comes with age Somehow or another we've got that all turned around backwards that the older you get, the less value you have, which is not biblical and it's not the way it is. There's great wisdom in age. You've lived life, you've seen many things, you know. I'm not saying I'm the smartest cookie in the jar, but I have been around long enough to have seen different things happen and I hope I know how to make good decisions and smart decisions on things I've learned in life, decisions on things I've learned in life.

JaniceHost03:04

Yeah, I've spoken with a couple of kids who you know. They're elementary age because sometimes I'll sub at the schools locally and they think they're pretty smart and I'm glad that they think they are. But I have on a couple of occasions said, would you have a three-year-old tell you what to do? And they said no. no, I said that's how I feel. Sometimes I've been around a long time, got a lot of information up there. Yeah, yeah, every once in a while I pull that information out and use it.

Mary AnneGuest03:35

Exactly, and you know it's funny because children are adaptable. I think part of our issue is children are adaptable to a certain extent in life. They adapt to different scenarios. That's the thing I see the most with our age. It's really hard for me to adapt sometimes when I've done it for so long for some way and so to see it from a different perspective, someone else's viewpoint, which I love. That word, it's my favorite word. That's hard to do the older you get, because we do become set in our ways. But that doesn't make us bad. That's just who we are. But it is something that there is wisdom with age. That's what the scripture teaches. So hey, if you don't believe it.

JaniceHost04:19

Some daysI think I'm pretty wise and other days I have to wonder. Sometimes I go, what the heck was I thinking? One of the guests we just had on recently talked about working with women. She's a psychologist, but anyway, she said that the funny thing is that she'll go to a group meeting and she'll say how many of you are forgetful? And she says every person in the room raises their hand. Yeah. And then she says how many of you think you have early signs of Alzheimer's or dementia? And she said every person raises their hand.

04:57

So there's a huge fear out there about losing those abilities Right.

Mary AnneGuest05:03

But you know what I say. My legs aren't as healthy as they were when I was a cheerleader and running track. They're not. My hip joints aren't the same. They're not as pliable as they used to be. Now that all being said, in high school I couldn't make good decisions lots of times because my wants got ahead of what I really truly needed, or you know. But the older we get, our brain's going to get tired. It's a body part. There's one thing, to age normally with your brain, and then there's an abnormal brain. Abnormal brings in dementias and different things, but just purely aging also affects our brain and that causes some things to just not be as perky as they used to be right.

JaniceHost05:58

You know it just is what I said in another podcast. I gotta move some stuff out to get some more in exactly so I might forget those things. Exactly so when did you begin your work with those living with dementia? 

Mary AnneGuest06:10

You know I was a family practice nurse in Texas. I loved it because of how I was raised. We had a family physician. His wife was his nurse and we went to that physician from the time I was born and he was my mom and dad's physician till the doctor passed away. It was like a huge event when we couldn't go see Dr. Lowell Harris anymore. He sang at all of our family funerals. Our entire family went to him. But I loved his wife and about that time Marcus Welby was on TV. Dr. Kildare was on.

06:47

No one that's younger is going to know Dr. Kildare, but they all had these offices and all of these people would bring their families in. I just wanted to be that nurse that worked for that doctor, but I wanted it to be in family practice. And then when it happened, it was at a time when everybody had a family practitioner. It was a family doctor and he would send you to other places if you needed it, but you weren't treated like cattle, and so that's kind of what I wanted to do and I was getting to do that and I was thrilled.

07:20

But at that time there was this thing coming in that people kept talking about this word dementia or Alzheimer's, or people were cognitively in a bad way or they just didn't really know what to call it, and a lot of them called it a mental illness. And in the beginning that's where we failed. People living with dementia are treated as a mental illness. It is not a mental illness. It's all about brain changes. It is a disease of the brain. And I kept thinking these people are not crazy, because that's what people would think They'd say. Here comes Miss Jones. Oh, she's crazy today. What crazy thing is she going to do today? But she didn't seem crazy to me, she seemed lost to me. She seemed like my grandmother who raised me, and she was just lost. And she didn't seem like the schizophrenics that we got. Nothing wrong with that, they're sick too but they just didn't make sense to me. And so the longer I was there I just kept thinking something wasn't right.

08:28

And then one day the physician that I worked for said we've got a little lady coming in for a checkup and she doesn't have a physician. She did this, this, this and this, and I just wanted her to come for a checkup. And lots of times we would get patients for rechecks at the office that came in just in the ER. So when she came in she was in her robe and gown and she had driven herself, which was scary, you know, and her son was in Dallas, so she had no one, She'd been totally living alone and she was just off the charts saying things. It just didn't make sense. And so I worried about her.

09:09

And a couple of days later something like that it wasn't very long after that visit we had heard there was an accident out on the interstate. Our office wasn't far from the interstate and there was a woman in her robe and gown. An older woman was going the wrong way on the interstate and hit a car head on and it killed her and I knew it was her. I knew it was her and so that kind of started me looking into what is this thing called Alzheimer's? What is this? This can't happen. It was like my grandmother dying in front of me, almost. She was a precious woman. She was just lost and had no one to guide her and I said we got to do something.

09:53

When the doctor and I had all kinds of conversations and he got married. You cannot save everyone. I was terrible about that, especially if they were older. I loved working with the aging population, but I was raised by the aging population. My grandparents helped raise me, so there was never this oh, you're old, I'm not going to have anything to do with you. I'd sit at my grandmother's feet and listen to every ounce of wisdom she could give me, and I still use it to this day. It never has come back void, ever. Everything I am today they taught me because my parents worked and we stayed with them in the summers and we stayed with them on vacation, and so they taught me and I thought there's got to be a better way.

10:34

And there was a position open at that time in another city in Texas. That was a new treatment center type thing, originally for rehab, and in the beginning Medicare didn't pay for rehab and so they had this nonprofit agency that took care of rehab. They'd take college students, let them train and they would help people with rehab that their insurance wouldn't pay for at the aging population. Well, when Medicare started paying for it, the nonprofits that did that were displaced. There just was nothing to do. So they had been studying what the next upcoming thing would be and of course it was dementia. And back then all you heard was just Alzheimer's. Everyone uses that big word Alzheimer's when in fact it's dementia. There is no such thing as just dementia. There is a type of dementia. So I've been through it from the time when everything was Alzheimer's and nothing else until now when there's so many different dementias.

11:38

But I loved it, because people living with dementia make me smile, they make me happy. I love their honesty, that they can be honest with me, Like today. I walked in, They've not seen me in a week and my hair's cut shorter. First thing they say is look at that new hair. Now it's been a week since they've seen me and some of them can't remember what day of the week it is. But if you have a relationship with them, they love those things, because guess what? I noticed that about them. Oh, you got your hair done. Oh, you look so pretty today. That's a great outfit you've got on. Who in the world doesn't want to be treated like they have value, and people living with dementia are often treated as second-class citizens. They don't have the ability to learn anything anymore. That is just bull too. So that's basically how I started. I saw a need and I wanted to right the wrongs done to people even then living with dementia, because I knew that little lady was not crazy.

JaniceHost12:55

That's so sad, you know, I know, and one of the things that we've talked about earlier too, was the caregiving process, and so she had no caregiver, she had no one to help her out. No, so tell me a little bit about your work as a dementia doula. I actually looked it up and saw that there's certification for it and everything. I only heard of a pregnancy doula before, right.

Mary AnneGuest13:16

And that's how it's always been. And you know, I've done this here in Gallatin for 13 years and I only learned about end of life doulas probably I didn't know a couple of years ago. So there are end of life doulas they are birth doulas. There are dementia doulas not as many dementia doulas, because it's kind of different than end of life doulas and so dementia doula is someone that walks side by side with someone living with dementia and when you get a diagnosis right then needs somebody to help you plan what your future is going to look like.

13:53

Because, no matter how much we look at it, there is no cure for Alzheimer's, there is no cure for frontotemporal lobe dementia, there is no cure for Lewy body dementia. So we have to learn to live them in the best way that we can. It just involves everything. It shuts your organs down, it's a death sentence. It's not pretty. It's behavioral at best. And that's what we tend to look at is the bad behaviors. We call them unmet needs, because most of the time when our loved ones get aggravated at us, there's a need that they want but they can't tell you. So dementia doula is kind of like person-centered care. We come and walk alongside somebody with dementia. We give them holistic support. We are not medical, but we are trained in a medical format because we have to understand the brain and what's taking place. I hope I'm making sense.

JaniceHost15:03

That makes all the sense in the world to me.

Mary AnneGuest15:04

We have to be trained in what dementia is, or we're going to always believe that they're just acting up or being quote, aggressive. Let's give them a pill. There haven't been pills made yet that change the trajectory of dementia, not one. 

JaniceHost15:23

So you work at a place called The Veranda, and what is your capacity there? Is it as a doula or is it multifaceted?

Mary AnneGuest15:31

It's a multitasking job. It's called Veranda Ministries, so that's the umbrella term. Kind of like, dementia is the umbrella term and then you have all these raindrops falling from that umbrella. There are different types of dementia.

15:45

Well, here Veranda Ministries is an umbrella and underneath it there's programs. So there's doula programs. There's a program here that we started with. That is a respite program called The Veranda. We allow loved ones to bring their loved ones here. We take care of them for four hours. We are a faith-based nonprofit. We take care of them short term ten to two, on a certain amount of days and this building becomes their domain. This is their place. This is where they can thrive, this is where they can be who they are. Nothing they say offends us. Nothing they do offends us. They're truly just being who they are and we accept them as they are. How hard is that? We don't have to agree with everything somebody does.

16:43

I don't necessarily like getting hit sometimes, but I will tell you this 99% of the time it was my fault. I didn't think a situation through. One time there was a lady that was beating the wall and she was mad she goes, I've got rights. And so I walked up to her and we knew through training we are all trained through Teepa Snow, who, to me, is one of the greatest advocates for people living with dementia in this country and we are a designated organization for her, the only one in the state of Tennessee and she was beating that wall. So I knew not to walk up to her when she was mad or I was going to get hit and it would have been my fault. So I walked to the side of her and I go, you're mad, aren't you, marie? You are mad.

17:38

She goes yes, I've got rights. And so I started right beside her. I go, you are mad, she goes. Yes. I said well, I get that. That's not right because you do have rights, don't you? And she stopped and looked at me. She goes yes, I do. I had no idea what that right was and I'm not sure she even knew, but at that moment something triggered in her brain that she felt she was being mistreated or not being listened to. So the key thing for me to do was to listen to her anger, stay far enough away. But if I'd walked up and just gone, oh, it's all right and patted her, she'd have slung back and hit me because that's not what she wanted. She wanted validation, which is a huge word in dementia, because no one validates people living with dementia's feelings. It's just Alzheimer's, yeah, and they're crazy.

JaniceHost18:40

And they say old timers, 

Mary AnneGuest18:42     

Oh lord, that drives me crazy.

JaniceHost18:44

I've heard that. It's not what it is, but anyway. So how many people are on staff and how many people volunteer?

Mary AnneGuest18:53

We have three paid staff. Some are just here part-time. I'm the only one that's, quote unquote, full time and then we have 10 volunteers, and so volunteers are the reason we keep the cost down. It's the reason that we stay going because they're trained. I train all of our volunteers. They can't work here if they don't understand dementia, at least on some level. You don't have to be certified through Teepa Snow, but they are trained through that positive approach to care. So they are the backbone of who we are and you know what. They do it because they want to do something good for someone else and someone else's family.

19:42

A lot of them have been caregivers before. A lot of them have family members that have dementia and a lot of them are just people with good hearts that want to come in and say I want to make a difference in the lives of people living with dementia. And so we've been here 13 years. We've had a lot of people come through this building. We've actually had volunteers that started 13 years ago that became friends here, clients here. We've had them for five years. We've had them for 10 years. They become family to us and so do their families.

20:17

So that's The Veranda program. It's activity based. They're in there now doing something fun. We serve lunch and we have snacks and we do all kinds of fun things. And Wednesday's Ladies Day. So we do all kinds of froofy stuff. On Wednesdays we have jewelry parties, we have all kinds of things. They can do many things that we don't really give them credit for, like remembering that my hair is shorter this week than it was last week. So we have the doula program. We've hired a grief support counselor. She has a master's in counseling. That's helping our families.

20:55

The saddest part is I keep them here a long time and then they're gone and they've made their journey to heaven and so their families are lost. And we've had such great contact with them and I saw them so sorrowful and suffering with that grief and so I thought, okay, I can't just let the families just fade away. And I want you to know, we have like 10 women already that were caregivers, that feel lost because you have to understand they haven't had a life in 10 to 15 years, right, and they're thrown right back into a society that says, hey, who are you? I don't remember you. So I always say that I do believe God gave me the gift to do what I do and I'm forever grateful for that. But it took 13 years for me to sit down one day and watch a family in the torment.

21:54

And Dr. Potts said Marianne, you know what you're supposed to do. You tell their stories. The best way to train someone is to tell their story. What caused Miss Jones to do what she did? Well, this is why she did it. I was at training that I do. I was telling these stories and I said I don't want you to look at this PowerPoint. They get on my nerves so bad. I said because you're not going to remember. Slide nine was this, this and this, but you will remember this story about pink lipstick, and there's never been anyone that I told the story about the pink lipstick episode, that when they see me, they say do not use pink lipstick on me. And so I said you know what, Dr. Potts? I'm the keeper of their stories.

JaniceHost22:50

Yeah, well, yeah, I'm all about stories, as you know. One of the things that I keep thinking about is when my uncle went to assisted living. You know, some are better than others, of course.

Mary AnneGuest23:02

Yeah.

JaniceHost23:05

But I wanted everybody there to look at him as a person, not as someone who was not capable or anything Right. But I decorated outside of his door and I put a little toy fishing pole out there because he loved to fish. Yeah, I put a picture of him squatting by a campfire when he was in the Korean War and he was a sergeant and he was one good looking guy, yeah, and I hung that on his door and so I put all this little information about him and I think people knowing the backstories of someone is very important because they just become a body at some point to a lot of people they do.

Mary AnneGuest23:40

Well, to just be blunt, they're just a butt in the bed. Okay, yeah, and that's not being mean, because if they don't know their stories, it's not fair to the staff that takes care of them.

JaniceHost23:53

No, and I think about this. My aunt was in dementia care last fall and you know people do what they can do but they're understaffed. And you have people that are good. You have people that are not so good at their jobs, but I know because I used to staff hospitals and nursing homes many years ago. But anyway, the pay was horrible and people wanted to complain. But how many people would go and do what you're doing every day and have that patience?

Mary AnneGuest24:20

Not many. Here's what I see, and it's the truth. I'm not going to back down on this one. When that healthcare becomes profit driven, profit wins. You understand that I mean it's profit driven. And so when the profit is down, you have to have somebody in a bed. That brings the profit ratio up. That's business. So how do you dehumanize a person to the fact that I can't care for them but they can stay here because you gotta have profit?

JaniceHost24:56

And you know, I don't know the answer, I really don't, but we were talking about that with the cemeteries, how they're being bought up by so many big corporations.They're not being as well kept and things like that.

JaniceHost25:07

It's just money, money, money. 

Mary AnneGuest25:10

It is money and it's the world we live in. But people with dementia don't comprehend that. All they know is I'm stuck in this room. I want to get out. I want to go where those other people are laughing, but I can't get out. I'm going to knock this door down and I'm going to knock you down in the process. I want out! Well, they get drugs so that they'll stay there. But you know what, if you did that to a child, you would be on every major network in the world.

JaniceHost25:39

So when a family member contacts you with interest in bringing their loved one to The Veranda, what is the process?

Mary AnneGuest25:47

We have a system where we have an assessment that we do, things they like, things they dislike. It's as important with dementia to know what a person doesn't like than it is important to know what they do like, because if you give them something that they just hate and don't give it to me and tell me it makes me poop I've seen that happen If you eat this you'll poop better and feel better. Miss Jones, what a thing to tell somebody at the dining table for pity's sake. And so you don't do things like that. And so you have to know their dislikes so I'll know not to give someone something that they just hate because they won't eat anymore. They'll push the whole plate away.

JaniceHost26:33

Is there a waiting list? 

Mary AnneGuest26:34

You know, sometimes we do have a waiting list because we're only allowed a certain amount of people by state regs and because we're just respite. But it gets me a little bit sometimes because we may be just respite but we make a difference in people's lives and we make a difference in their family's lives. So we try to get as much information about that person as we can. We set them by cognitive position, so you have a person all on the same cognitive level at a table so you don't have someone doing something that's offensive, because they can get mad, you know, and they'll roll their eyes, especially women. Women never lose the ability to be curt. I'll just tell you, you can put 12 men at one table. They're happy as the day they were born.

27:20

They don't care. They just talk. Women not so much. And we get a list of meds. I'm trained and we all have classes on which drug is for what. We don't disperse them, but we know what they're on and then if they change it, then we're the ones that notices it. So they come and they'll stay one day with us and we've had very few, maybe five and 13 years that refuse to stay.

JaniceHost27:50

So you're assessing them and they're assessing you also on that first day yeah, to see if they want to be there.

Mary AnneGuest27:56

You know, people think that dementia makes you stupid. I think we've got doctors, lawyers, dentists, all of these people that are very well educated. They still are. 

JaniceHost28:011

Well, yeah. and they do have all that background and are probably able to pull it out and think about it 

Mary AnneGuest28:15

Exactly. Gives them something of the past that they can remember and that they were a part of, and that people valued, valued and respected in the community.

JaniceHost28:25

So you published a couple of books on the topic of dementia. If you could give me an overview of each of the books.

Mary AnneGuest28:32

The first one was Remember For Me, because that's what we do here we remember for them and that helps them remember lots of things. Like I had a trapeze artist. Honestly, I'm sitting here looking at her picture So you can see it. I mean, everyone else won't, but look at this woman, she was beautiful.

JaniceHost28:54

There she is, oh wow.

Mary AnneGuest28:55

Yes, as a trapeze artist, I just had to hear her story. She'll be in my third book and I learned all about Florida and the circus. It's just the coolest story, and so that first book is those stories.

JaniceHost29:10

My grandparents did not have dementia, but golly, I really wish I'd asked more questions.

Mary AnneGuest29:15

There's so many stories. I lived in Nacogdoches, Texas, and my vocal students were young kids and we all sang as a group the National Anthem. One of the clients that we had at the program that I worked at wanted to go to the basketball game, and so I told her sure, Saturday I'm going to the basketball game, you come? And so I tried to call her that Saturday morning. She didn't answer and I said well, I'm going to go ahead and go to the ball game. I figured she'd forget. Oh, was I wrong.

29:44

Half time, all of a sudden comes a police officer and he walks this little lady down. I went, oh my gosh. He walked her all the way across the basketball court and came to me because she said, and I quote, I come here and I'm looking for this brown haired, pretty brown eyed woman that sings a lot. And the police officer was there all the time. He knew that I sang and he goes, is it that woman right over there? She goes. Yeah, that's that heifer. She was supposed to pick me up and she didn't. She had called a taxi. The taxi called her son and he said let her go. And she walked across there, blasted me a time or two, and so she said, Just look at you, I've missed this ball game because of you. And I said, but I'm glad you're here. And she goes. I know, play ball. It was a baseball term, you know, but we were in a basketball game. So you know, it's that story I had to tell because I'm not sure I would have had that much perseverance.

JaniceHost30:54

Yeah, and she didn't play around, she got the cab, the police officer, everybody yes.

Mary AnneGuest31:00

And then, over the loudspeaker, it said will  Ms. Jones, please come to the top, your ride's awaiting you. And I went. Well, lord, she had even planned her exit,she is.

JaniceHost31:12

So she's a princess. So it's those kinds of stories. Yeah, Well so you wrote the book on stories and then you have another book that you released.

Mary AnneGuest31:23

Right: The Proactive Perspective.

JaniceHost31:27

What is that about, and is it similar or is it more clinical?

Mary AnneGuest31:30

It's totally different. It has more clinical things in it, but yet it's about how you can be a really good doula. It is a workbook of types. It explains different types of dementia. It explains person-centered care. It explains relationship-based care, the pillars of dementia care. It explains different medications, so you'll know what a doctor is giving your loved one. Why in the world would this little 90-year-old woman be on three antipsychotic drugs? Because side effects from them mimic bad behaviors. All these things.

32:05

And then there's some things in there from Teepa Snow as well, things that we use here how to train the gems. We don't call them stages here. That's Teepa's way of saying rubies, diamonds, pearls.  Pearl is the end stage, diamond is the beginning stage.  And so a diamond is rough, cut, faceted, sharp, so is a person with that title. Then at the end there's pearl, which is soft, pretty enclosed in a shell. They're dying, she's enclosed in herself, and at that point that is the end stage. So it's a way to not make it sound so clinical but give it a face of royalty. Rubies, diamonds, emeralds, all of those things about those stones have a direct connection to things that happen in those stages of a person living with dementia. Until we can learn to see people living with dementia. From their point of view, we're going to fail in caring for them, because it is all about their point of view. 

JaniceHost33:18

And when you're talking about the stones, it really makes me feel uplifted. Yes, and part of that is for people that are caregiving to have that as a reference instead of saying they're at such and such stage with this, this, this. I know they are at the pearl stage and that sounds beautiful and it does. So you know, it's not ugly, it's just part of life.

Mary AnneGuest33:40

There's nothing ugly about those gemstones, so a lot of those things are in that book and it's meant as a book to go along with the doula work that we do.

JaniceHost33:50

One of the things you talked about in one of your episodes, I’ve got it written down here, was you discussed geriatric psyche and dementia and what would you like those who are listening to know about those terms?

Mary AnneGuest34:02

I have to be careful here, but it is one of my pet peeves. Let me just put it to you this way geri psych is for people living with mental illnesses, which is schizophrenic. It can be controlled by medication. Bipolar can be controlled by medication. But there's nowhere to put these people that are living with dementia unless you have geriatric psych. But they're not set up for dementia, things like that, and so some people have to go. But more than that, it's the idea of taking somebody with dementia into a place that they've never been. You put them in a room with someone who's living with a mental illness schizophrenic. They don't have private rooms and, oh, by the way, you can't see your loved one except once a week for one hour. It is the worst case scenario for someone living with dementia.

35:08

There's a new drug out now that drives me nuts and I'll just say it. It's Rixaulti. It's for agitation. They've spent millions advertising it. Then at the end of the commercial it says, there's a black box warning, Do not give to people living with dementia psychosis. I want to go. Then why are they doing it?

JaniceHost35:28

We've talked about things that were fairly positive actually because of your outlook and your perspective. But I was watching some clips from your Facebook page and then I listened to the podcast and I noticed in the podcast you have laughter sprinkled throughout, but this one was a riot. I mean, I just got so tickled at the Derby Day. So you all celebrated the Kentucky Derby, is that it?

Mary AnneGuest35:54

Oh yeah, we do it every year. But one of the biggest days other than Christmas is Derby Day. And so here's the deal. Everybody knows in this part of the world what the Derby is. They love horses, they love horse racing. The ladies have on hats, they have their strawberry little drinks with strawberries in it. They're toasting. It's hysterical. And we have a race. We tie our ponies to a walker and we have to race around and the staff races and they bet. They all had money to bet and the person that won the most money was the champion of the thing and we interviewed all of the clients and one of the things I said on the post was you won't be able to tell who has dementia and who doesn't. And you couldn't. I could. I loved it, you know it. My goal was that they have a normal day at the races.

36:49

They knew it wasn't the real kentucky derby well yeah, but it looked like it and it didn't matter, because they were human for one day. They were real.

JaniceHost37:01

They're participating in life, they're participating. When we talk about Restless to Renewed, I keep wanting people to just keep participating. Find your spot, find your tribe, find your spot, whatever.

Mary AnneGuest37:12

You know, as we get older, we do have knowledge, we do have a past that gives us direction, we do have some good ideas. We don't need to be growing older and have no self-worth. That's not what God wants. You know, what I'm doing now is the happiest I've ever been in my life as far as work is considered. I love what I do and I love to add things to it that helps families. The caregiver is a terrible, terrible place to be. Care partners is what we call them, because you're partnering in care, but so is the person with dementia, I'm thinking.

JaniceHost37:51

I would typically have looked at it as oversight. I have oversight over this person and walk alongside partnerships.

Mary AnneGuest38:00

Right, there is a pecking order. And when you're a mother and the daughter walks up to you and starts bossing you around, that indignation that wells up inside of you, it's like who do you think you are? I raised you, I've changed your diapers, I know you, I've known you longer than you know yourself. And the same thing happens with dementia, because they'll come and tell me, she thinks I am so stupid. So they do know. And the one minute that we talk down to them and not give them respect is the minute they're going to understand what you said. And then their hearts are broken. I don't want to break those people in their hearts. I want them to feel whole and complete and worthy and justified. And so we have to figure out how to mold all this together where life is just a little bit easier, a little bit better, and I think probably dementia wouldn't be the stigma that it is if we could do that.

JaniceHost39:11

Well, those are some good words and I appreciate it. I think we're going to go ahead and close today, but I cannot believe what I've learned, even though I thought I had already learned some things by listening to some of the podcasts, but you bring it home for sure. So it's Veranda Ministries and it's located in Gallatin, Tennessee. And I don't know the hours of operation, but just go to their Facebook page, go to their website VerandaMinistries.org yeah, VerandaMinistries.org. And then also we will have a page on our website that features Mary Anne and her work and some imagery. I'm hoping I can get a few pictures at The Veranda, yeah, and also links to her books, yeah.

40:04

And if you are interested in learning more about Restless to Renewed, we're at RestlesstoRenewed.com and we encourage you to follow us on our Facebook page and on our Instagram page. And I'm not going to leave you with a quote today, because I think what Mary Anne has said has already touched all of our hearts  So we're just going to close right now and I'm going to say thank you to everyone and thank you, Mary Anne, 

Mary AnneGuest41:00

Thank you.