Mary Anne Oglesby-Sutherly talks about dementia — the challenges of getting a diagnosis, the challenges of medication, and the challenges of day-to-day living with this impactful condition. Her respite care organization in Gallatin TN, The Veranda, offers a place for adults living with dementia to come for the day.
[00:00:00] Diane Hullet: Hi, and welcome to the best life. Best death podcast. I’m Diane . And today I’m here with a special guest, Mary Ann Oglesbee southerly. I think I got that. You did. All right. Marianne is the founder and executive director of the veranda ministries and she works extensively in the field of dementia. So
[00:00:21] Mary Ann Oglesby Sutherly: welcome Marianne.
[00:00:22] Well, thank you. It is great to be here. It’s nice to meet you. I’ve been looking forward to this Yeah. You know, podcast and aging and dementia and all those things kind of combined. It’s, it’s just we talked earlier. It’s a great place to be. It’s a great place to be these days, because there’s a lot to be said, there’s a lot to be done and I’m honored to be here.
[00:00:44] You know, I heard your podcast driving down the road one day when you were talking to Barbara about hospice and, you know, I listened and I listened to you and I listened to her and I thought, well, heck you know what, we’re going to try this. And it was just. I’m telling you it was eye [00:01:00] opening because I am a doula.
[00:01:02] That’s part of my of what I do. And I was actually a doula before. There was such a word as aging doulas, or end of life doing this. I’ve done this a long time. I’m not a spring chicken. People in podcast land, can’t see me, but I’m not a spring chicken experienced chicken. It’s an experienced chicken.
[00:01:21] And so when I listened to Barbara and I, and I heard her talk about how hospice had changed, I was on the, I was in the cutting in the early stages. I’ll just put it that way in the early stages of when dementia really came to fruition. Many times as a little girl, I would hear somebody say they have hardening of the arteries or whatever.
[00:01:44] And so once I got started and was in a, I tell everybody, you probably will understand this, but I was a nurse in a family practice, kind of like What is the word I’m looking for? Kind of like Dr. Welby. And when I tell that most [00:02:00] people will look at me and go, who is Dr. Welby, a certain age? We know a certain age.
[00:02:06] We know, so. Anyway. I saw people coming in that just did not seem as they called it back then to have a mental illness. They were different. They were aging, there were things different. They were not schizophrenia. They were not bipolar. They were just getting older and forgetful. And so it was kind of really early in, in the game.
[00:02:28] And then we had a lady that came that we were on call one weekend and she came in for her checkup. She had on her robe. And I thought that was kind of strange, you know, you see all these visual cues now that you, you know, but then it was just strange. Well then about two or three weeks later, there was a car accident down from the doctor’s office.
[00:02:51] And the doctor that I worked for said, there’s been a terrible wreck. Someone’s going up the ramp instead of down the ramp and they were killed. And they said the little [00:03:00] lady was in. Her pajamas? Well, I knew immediately it was probably her. And so it was. And I will never forget her. Cause it started me in a journey caring for those with dementia, that’s lasted 25 years.
[00:03:17] And so I, you know, we laugh when I I am certified with cheapest STO as a trainer and a coach and a consultant, which I’m proud of. I’ve been listening to taper since taper. Wasn’t the person that everybody went to 25 years. Right. So I’ve saw her in her old videos when I worked in a program for people with dementia.
[00:03:38] And so that, that training through Tepa those certifications through TPA has taught me many things about dementia, but the, but the probably how do I want to say this? The one thing that she has taught me is that people living with dementia are people. And sometimes when we get to [00:04:00] speaking about what is dementia, what’s taking place.
[00:04:04] Sometimes we forget the person with dementia, but there’s two people in this family. There’s the person with dementia. And then there’s the family as well. And so sometimes the same things work, but sometimes they don’t. And so I’m a huge advocate for those living with dementia. They’re given a bad word.
[00:04:23] They’re always thought of is people with quote behaviors, which we call them unmet needs. It’s not always behaviors. And so you know, I love what I do. I have a program for people with dementia that come during the day a respite program. It was so important to me that three years ago, I had to go to the state of Tennessee and have legislation passed in order for us to stay because we are housed in a church.
[00:04:51] We are our own separate nonprofit, but we, in order to stay open, we had gone five years, lost, changed, had to have a [00:05:00] new law. And so I worked a year to get legislation passed to where, you know, many churches has mother’s day out programs where you can take your children. And so I had two legislators come to the veranda and sit and look at me one day and, and I said, they, they thought they were being.
[00:05:17] Put back into the chopping block. Cause I didn’t know what they were coming for. And I said, can you just answer me one question? Why can a mother with a child take their children to the church to have a program? If you’re older, there’s no place to go. And you’re, there’s so many rules and regulations.
[00:05:38] You can’t love on them. And I said, why is that? If you can have mother’s day out, why can you not have caregiver day out in the world in which we live? Well, she just looked at me and said, I don’t know that answer. Yeah.
[00:05:51] Diane Hullet: Yeah. Yeah. That was a convincing
[00:05:53] Mary Ann Oglesby Sutherly: moment at convincing moment. And. I will find out. And so that started the journey.
[00:05:59] And so there [00:06:00] was uphills and downhills, you know Tennessee is one of the most licensed medical that there is. I mean, you have to have a license for everything. So the bill actually kept us from having to have a adult day services, license, like an adult daycare program, but it put us with the. DHS apart view and services as a person that had been wavered that licensed because we were respite, we’re totally a respite program.
[00:06:32] We are not a true adult daycare, but we have to abide by the same rules for some of them. And we have our own rules. So it was a big day that day because it kept us going. And up until that time up until today, actually we probably had 2, 225. Families because the average stays two and a half years. So if you take someone with dementia and you give them their world, you let them have a room where they can be who they are, which is what we [00:07:00] should be.
[00:07:00] But, you know, I mean, you let them be who they are. You let them talk about the things they want to talk about. Laugh at the things they want to laugh at. They throw. They say
[00:07:13] Diane Hullet: that’s that’s really it. And so your program is it, it is a day program and you have about how many people
[00:07:21] Mary Ann Oglesby Sutherly: we are allowed by the state to have 15 at one time.
[00:07:24] And so they’re allowed a certain amount of hours, truly 15 people living with dementia in all different stages is a lot on Sundays. Six or seven men now, some have frontal temporal lobe, which we can talk later about those, those types of dementia. But, but one, one day was blowing a harmonica. One made a sound like a a parrot in a tree.
[00:07:47] One was going one was going. And so all of this was going on at the same time. And I just walked in that room and I went. Okay, this is going to be a day that’s in
[00:07:59] Diane Hullet: chaos, [00:08:00]
[00:08:02] Mary Ann Oglesby Sutherly: chaos, but you know what? They were happy.
[00:08:05] Diane Hullet: They were having smile. And so are these people who, in, in your program, they come to you for a day or a part of the day, and then there are family or there they live
[00:08:14] Mary Ann Oglesby Sutherly: in home.
[00:08:15] They all live at home. It gives them socialization. I don’t care who you are in this day and time we live. If COVID taught us anything, it taught us that you cannot live in seclusion. We’re not made to be in seclusion. And so when you take someone with dementia, who’s used to getting out, or you lock a wife and a husband in a house for a long period of time.
[00:08:40] It was, it was just as detrimental to them almost as it was to be in a community setting and not get to see their loved ones, not quite as bad, but still had lasting effects. So that was a an issue sometime when we started back, we did not have to close. The state of Tennessee did not re choir adult day [00:09:00] services because people had to work and they knew if they did, then it would, but we were very careful, but we did close, you know, at some point.
[00:09:08] My point is they live here. They stay here for awhile and they’re who they want to be. Yeah. And then
[00:09:17] Diane Hullet: we’ll back up for us, just a little Marianne and talk. Can you just tell us, you know, one is dementia, how do we how do we caregivers or people watching our spouses or our parents or our siblings?
[00:09:31] How do we understand them? And. But what helps us at the beginning of this journey?
[00:09:37] Mary Ann Oglesby Sutherly: I know. So in the beginning, it’s always devastating when you hear that word. And so dementia itself is a chemical change in the brain. It’s a structural change, but end up being a very severe structural change. It, the brain is actually dying.
[00:09:58] It’s and, you know, [00:10:00] people think that the steel sites, mental illness, but it is not, it is a structural change in the brain. The brain will actually. The best way I know to describe it sometimes as you know, those lupus sponges back in the seventies that were hard as a rock, but you stick them in water and they balloon out in there.
[00:10:18] So moist and juicy, and they just feel so soft. What is kind of the polar opposite? You’ve got a nice juicy brain that’s functioning. Great. And then it starts to shrink and then it gets holes in it, bigger holes, and then it gets dry. I mean, the juice, the fluid around the brain dissipates. It’s just a terrible disease.
[00:10:41] It is a terrible disease and cognitive functioning, those things that, that we all take for granted, you know, they lose the ability and it’s a slow, it’s the longest death. It is the most dreaded disease in this country, even in the world, actually. So. It’s brain failure. [00:11:00] That’s the best word. It’s just Brian failure.
[00:11:04] And it’s a long journey.
[00:11:05] Diane Hullet: And it seems like my understanding is there are a lot of different kinds like
[00:11:09] Mary Ann Oglesby Sutherly: defenders. There’s hundreds, hundreds, hundreds of dementias. And I might say here that people call it dementia. But it’s, it’s really, dementia is a big umbrella. Dementia has many raindrops that drop from that umbrella of dementia.
[00:11:29] So decided someone. I have people coming in. I don’t have Alzheimer’s. I don’t have my loved one. Doesn’t she just has dementia. It’s almost impossible to have just dementia. You have a dementia, you have a certain kind of dementia. So. And it’s hard because it’s hard to get that diagnosis even
[00:11:49] Diane Hullet: right there, there are variations.
[00:11:51] And depending on which part of the brain is being impacted. Right, exactly. Like getting ready. I know. I read somewhere that you really can’t know [00:12:00] exactly until someone has died. And then at that point, you know, really you, you maybe, yeah.
[00:12:05] Mary Ann Oglesby Sutherly: If you could get a pet scan, but Medicare doesn’t pay for a pet scan, pet scans show.
[00:12:11] Many many more things than even an MRI with contrast, without contrast, you don’t see as much with contrast, you do see quite a bit more. And so that, that brain ceases to function at a very slow, slow
[00:12:32] Diane Hullet: pace, slow pace, and depends on the individual. And dependent does
[00:12:36] Mary Ann Oglesby Sutherly: depends on what type of dementia the most common is also.
[00:12:41] Diane Hullet: Yup. Yup. And same, same. Why is that the most common or what do you know about that?
[00:12:46] Mary Ann Oglesby Sutherly: You know, I, I think I’m not even really know if I could answer that correctly without I just know that it affects the majority of people. Most of the time we see there’s more women [00:13:00] that have it. There’s certain demographics of people that seem to have it more than others.
[00:13:08] But dementia Alzheimer’s is that one that is the most because Dr. Alzheimer saw the plaques and the tangles, and you can see that and you know, that you can see, but vascular dementia comes from. Vascular issues, strokes, things like that. Lewy bodies, it’s whole, it’s a whole different thing, but you can see the Lewy bodies, you get a pet scan, you can see those Lewy bodies.
[00:13:33] So there’s many kinds. There’s frontal temporal there’s. We have clients now that have frontal temporal that. Veterans who had agent orange, who has PTSD. So you throw all of that in there and God love them. It’s just, it’s just a bad place to be. So all the time, but imperative, if I could say one thing, families need to say, I [00:14:00] want to know what kind of demands.
[00:14:02] Don’t let them say it’s just dementia. Find out what kind, because the treatment’s different, how they react is different. Everything is. Interesting.
[00:14:12] Diane Hullet: So there’s the challenges of getting the accurate diagnosis and then there’s the challenges of not knowing how it will progress, both the person living with it and for the family members, caretakers.
[00:14:24] And then there’s just the challenges of the day to day. I mean, you wrote a book, you wrote a wonderful book called, remember for me life lessons, from those living with dementia. Tell us, tell us about the.
[00:14:37] Mary Ann Oglesby Sutherly: Well, the book is stories from families I’ve cared for and for people living with dementia. And if I was a voice for anyone is probably is a voice for families, but it’s more for a voice for those that live with dementia, because for some reason, That there’s a part of my heart that can sit down and talk to them and, you know, doesn’t make a bit [00:15:00] of sense to anyone in the world, but me and those stories in that book are from people that I’ve cared for over the years and they were pressing.
[00:15:11] Precious souls to me. And I had the honor of, you know, it’s pretty funny when you come here, I don’t know you as you used to be all. I know you as just a person living with dementia. So for me, it’s easier for me to love them with dementia. Than it is not to love, but for me, I love them in a different way.
[00:15:32] Diane Hullet: Take them where they are.
[00:15:34] Mary Ann Oglesby Sutherly: I take them where they are, and it doesn’t bother me because that person has got a long journey. I’ve known some of them for 10 years. Right. Right. You know, so I have a great relationship. The families it’s hard, right. Because they love the person they used to be. And I get that.
[00:15:51] It’s a, it is a doula may. Dementia doula made relationship because if you’re going to care for [00:16:00] somebody with dementia, it’s a long journey. There is no six months before you pass away. So to speak that you can come in and say that Mr. Joe, what would you like? Because Mr. Joe should have been asked that question 10 years ago, eight years ago, five years ago, if you want the accurate what it is.
[00:16:18] And, and so that is really a part of me that I want people to understand. If you work with people with dementia, it’s. It’s a long haul. I
[00:16:29] Diane Hullet: love that to kind of like it isn’t a, it isn’t the same as the diagnosis. That’s terminal. It’s really a diagnosis of a huge change. I remember one friend whose mother had dementia and really went quite far with it.
[00:16:43] I mean, she kind of recognized. But he said it, his, his relationship with her in that state, in that new place change, when he realized he could treat it almost like improv. So he said he would come into a room and he would just see what she said. And he would [00:17:00] just respond in the moment and just kind of riff and be with her.
[00:17:04] And he said he kind of found a way to find some joy with her in the midst of the grief. Having lost her as he knew her. Exactly always stayed with me because I thought it was such a profound way for the caregiver slash son to kind of reinvent his relationship. And yes, he mourned and grieved what changed,
[00:17:26] Mary Ann Oglesby Sutherly: but he, the longest
[00:17:29] Diane Hullet: he found a way to
[00:17:29] Mary Ann Oglesby Sutherly: be in the journey.
[00:17:31] Yeah. And it is a journey. And I always tell people, we have to find joy in the journey. If we can’t find joy. Everyone is going to be miserable. And so the things that they say, that’s just hilarious to me. Families might think, oh, so sometimes I’ll tell them. And sometimes I want, we had a lady one time that told all about her Christmas Eve with her dad dropped coming in from the war.[00:18:00]
[00:18:00] And she knew when she heard the train whistle that her dad was going to be there for Christmas. Even as a child, she looked out, it was this most gore. We were crying, literally laid over singing silent night, crying, thinking what a story and not a bit of. Oh, yeah, but it wasn’t a great story. It was an
[00:18:20] Diane Hullet: experience
[00:18:21] Mary Ann Oglesby Sutherly: and it’s an experience and you know what she was, it was as real as the rain outside in my office today to her.
[00:18:29] And she was thrilled because she talked about her daddy. There was a train track. She taught, he was in the war. It was Christmas. She was having memories that just got all tangled up. But for, but for 10 minutes she had the. Y she could
[00:18:45] Diane Hullet: tell her story. And she was in her emotions as they were in that, you know, quote unquote fabricated story, but it doesn’t matter.
[00:18:54] Mary Ann Oglesby Sutherly: Does it matter? It does not. And that’s, I think they’ve taught me how to love. I always say this. I’ve learned [00:19:00] more about love from people that don’t know my name than anyone I’ve ever known. They are the most loving to me. I can walk in a room the other day and I didn’t have on eye shadow. It was craziness.
[00:19:12] I’d been to the dentist and my mouth was all swollen and I just didn’t feel good and they knew I didn’t have on.
[00:19:17] That’s the, you know, you don’t look the same, you know, and sometimes I say that Dre or that outfit’s ugly, your hair doesn’t look good today. I don’t like your hair like that. And I go, well, I’m so sorry. You know, one thing, you know, the of information that’s out there. The one thing I tell people, there’s five I’m sorrys.
[00:19:39] If there’s one thing I’ve learned from Tepa snow, those five, I’m sorry. Five ways to say, I’m sorry, we’ll keep you out of more hot water than anything. It doesn’t, I’m not right there. Right. So if they tell me, I look ugly, I’ll just say, you know what? I’m so sorry. I just didn’t have time [00:20:00] today. And I I’ll do better tomorrow.
[00:20:02] Is that okay if I do better? Well, you better do better. Well, I’ll try and I’m so sorry, you know, but it puts them, it gives them a way to feel like they’re in charge.
[00:20:13] Diane Hullet: Sure. As you said at the beginning, I’m seeing it less as behavioral problems and more as needs that need to be,
[00:20:22] Mary Ann Oglesby Sutherly: you’ve got to have, you’ve got to make their needs and we all have the same needs.
[00:20:27] We want to be loved. We want to have water. We want
[00:20:31] Diane Hullet: to control. We
[00:20:35] Mary Ann Oglesby Sutherly: want. Think of us that we have sense. I mean, you know, I’m from the south, but good grief. Sometimes people just think people with dementia are stupid. They are not stupid. They are trying their best, their best to live in a world that they don’t understand either.
[00:20:55] And in the dark of the night, trust me on this in the deep [00:21:00] dark, this have not, they lay in the bed and say this. I can promise you. What is happening to me. I don’t want it to happen to me. How am I going to die? When am I going to die? They, they know what dementia is in the beginning. They know they get that diagnosis.
[00:21:21] They know that it’s quote unquote, a disease that there’s no cure for. And so they go, I’m going to, am I going to wake up in the morning and not know who I am? Am I going to wake up in the morning and not know who my grandchildren are? Am I going to wake up in the morning and not know who my husband I’ve loved him?
[00:21:37] 65 years? What am I going to do? Yeah. I love him. They are that way. And we have to see him that way or we can’t help them. We can’t reach them if we don’t. And that’s where those I’m sorrys come in. I’m so sorry you feel this. I I’m just so sorry, you know, I’m sorry. [00:22:00] My fits a lot of things. It’s a lot of things.
[00:22:03] Diane Hullet: Beautiful. Beautiful. Well, Marianne, I think this might be a perfect place to pause on our one of our podcasts, because I think there’s so much to talk about. Let’s pause here with this beautiful piece of having learned so much from people who are strangers about love, right? The sense of being present with them.
[00:22:24] Right. Thanks so much for part one. And we look forward to our second [00:22:28] Mary Ann Oglesby Sutherly: conversation. Thank you.